Away

This kid spent the weekend at his friend's house.

Not just a night. Two nights. Two evenings. Two days.

The weekend.

Gosh, I missed him.

Not initially, he has overnights pretty frequently, so I'm used to one night away. But once that time period passed, my maternal alarm clock started blaring, "He should be home by now! Where is he?!" and it made me CRAZY.

He had a blast, swimming (you should see the sunburn), video games, toys, friends, movies, baseball, restaurants, and church. The first thing he said after returning home was, "Next time? This summer? I'm staying for THREE nights!"

No, "Oh Mom, I missed you!"

No, "I'm so glad to be home."

Nope. Nada. Just the promise that he is so outta here this summer.

And surprisingly, I wasn't stung by his lack of reciprocation. I just held him down and tickled and kissed him until I felt he had paid his penance for not missing us more. I continued to ask him "But BubTar...didn't you miiiiiiiiiss meeeeee?" throughout the evening, just to see him giggle and shake his head no. I know he was thinking "My mom is CRA-ZEE!" But it sure was fun to tease him.

Somewhere between tickles and teases, I realized something, this is the warm up. The tiny little bits we let go here and there, letting our children stretch their wings and learn how to be without us, letting them create their own worlds, choosing what they'll do, who they'll befriend, how they will behave. It is practice for both of us, warm up for the big stuff down the line. Overnights turn into weekends away that turn into weeks at camp that turn into leaving for college that turn into living on their own that turn into marriage, perhaps. We slowly give away our ownership of these little people, handing them the reins, just a bit at a time to let them feel what it is like to be in control, to be the one steering, so that when they finally do ride off into the sunset, it is second nature to wave a fond farewell, knowing they are prepared for what lies ahead.

At bedtime, despite protests that he SURELY did not miss me, he begged me for a little extra reading and a little extra cuddling, and I readily complied. As I snuggled up next to my baby turned big kid, I thought, some day I'll have to watch him ride away, but I sure am glad it isn't today.

BubTar and Best Friend

I should write today...

But I've had a killer week...

Interview with the CDF

School district home visit for the KayTar

Rough draft of a group project for English

English quiz

Double portion of Philosophy

Major A&P lab practical (which I think I made a 100 on)

Chaperoned a field trip for BubTar

And next week promises more of the same...

Feeding Clinic appointment (which will likely be canceled because it alone costs over $300, not to mention the additional cost of test, if needed. the "facility fee" alone is $120...that doesn't include the physician at all...just the cost to sit in the office. I'M PAYING RENT. my 1-2 hour appointment costs as much as a one night hotel stay.)

Final portion of the autism evaluation for the KayTar

English assignments and quiz

Philosophy exam

A&P lecture exam, several chapters

So today will be spent...

Studying

Studying

Studying

Doing laundry I've neglected

Studying

Studying

Studying

Grocery shopping

Studying

Studying

Studying

Going to dinner with that crazy Bloggess and hopefully Julie, too, if the Democratic convention lets her out early enough...and from the looks of it, that is sure to be the highlight of my day.

So this is me, not writing, but promising I might soon. Maybe tomorrow. Or next week. Or something like that.

This is why I don't tell KayTar, "Say cheese!"

The Interview

Want to hear something surreal?

Our story is being told today in a hearing at our state Senate. If you follow the link, it is the Committee on Health and Human Services at top of the page. There is audio and video, but for some reason I can't access it on my computer.

Our story. In the Senate. Wow.

The interview went well, with the exception of BubTar shouting "Mooooom! Come wipe my buuuuuutt!" while she was tape recording the conversation. CLASSY! Honestly, I feel like I ramble on at times, but she said I did really well. It felt like it went well.

At the end she said, "Did L tell you that your story will probably be used on a national, as well as state level?"

I'm sure I answered with an eloquent, "Uhhhhhhhhh....okay, sure." while my mouth hung agape.

Then she said, "And we may want you to speak to the media, too."

And I passed out. Okay, I DIDN'T pass out. But I thought about it.

And she also said there is a book being published this year that our little tale might end up in, too.

That's when my head exploded. Okay, not REALLY. But almost.

Wow. Just wow.

Also, the CDF will be one of the featured charities on American Idol's Idol Gives Back show on April 9th. They are going to be working to get our story (and other's, too) up on their website so it is ready for any traffic the show generates.

Crazy, right? RIGHT.

I'm entirely out of my comfort zone here, and yet, onward we march. It is such an important cause, not only because it personally affects our family, but because it affects so many families and it is swept under the rug so often. There is a gross misconception about the state of healthcare in our nation and it is time that people realized that. And so I'm sharing our story. What else is there for me to do?



PS: Photos from Austin, as promised, and as stolen from Jana's flickr.


Me, Julie, Sage


Sage, Jana, Me

Contentment

This weekend, your brother and cousins were running around the yard. You grabbed my hand for help and tried so hard to run after them. They made it back to us before you and I ever stepped off the porch, and in a blink they were gone again. You and I kept moving, slowly and steadily across the terrain that feels so uneven to you, an unevenness I can't even register. Somehow, this manicured lawn is bumpy enough to knock you down. You shout "Friends! Friends!" as they zoom past us, again and again, as we plod along at a snail's pace. I see your eyes light up when they come close and I watch you wishing to follow them, to run free like all the others. I say, without thinking, "Poor KayTar can't run and play like all the other kids." I don't mean anything by it, I just say it, like maybe I'd say "Poor BubTar can't find his missing Lego." But then I think, really, it must be hard to be the one left behind. The one who can't do or keep up. You don't mind, though, holding tightly to my hand as we walk a wide, slow circle before returning to the safety of the porch. Even though you aren't part of the games, you laugh hysterically as waves of absorbed excitement crash through you. You watch and smile, happy just to be.

What would you say?

A couple weeks ago, I had a phone interview with someone from the Children's Defense Fund regarding our insurance woes. You can follow that link for handy little factoids, such as MY state has the highest rate of uninsured kiddos in the nation! Go Texas!

This was the only conversation I've had with anyone about this situation that gave me any hope at all. It was a quick phone call, mainly exchanging of information, but it was the first phone call that didn't end in some variation of "I'm sorry, there is nothing more you can do". It was the first phone call that left me with the smallest glimmer of hope.

She said that their outreach teams would be contacting various insurance agencies in our state, sharing our story with them, and trying to get somewhere. They will also be contacting legislators to that same end. At the end of our conversation, she asked if I would be willing to share our story with a larger audience, allow them to share it with the media, especially as they push for changes to be made to the current system. I said yes.

Tomorrow someone is coming to our house to interview me and take photographs for the story. This is a whole new world for me. I've never been THIS person. I've always been the person who politely declines and is much happier to stay silently in the background. But that KayTar, she got to me, and for her I'll shout it from the rooftops. But it isn't only that. I live in the state with the highest rate of uninsured children in this nation, and not all of those parents have the opportunity or voice to speak out. If I do have that ability, I have to take it...not just for KayTar, but for all the children like her, and all the families like ours. It's time for a change.

The interviewer sent me questions to ponder in the meantime and I'd like to leave you with one. What would YOU tell lawmakers about the need for SCHIP and Medicaid? I know my answer already, but I'd love to hear yours as well.

Cross posted at MOMocrats.

And don't forget to visit my photo blog for my Best Shot Monday!

Message from the desk of Anna WinTar

Have a fabulous Easter!

Another little milestone

Yes. Swimming. In March. Do you hate me right now? You'll feel better in May when it is so hot here that we can't go outdoors without risking heat stroke (really, we get nifty little warnings on the news).

My wee laddie spent the night at a friend's house for the first time last night. After our playdate yesterday (pictured above), he was invited to stay the night and he accepted. It was boy heaven. He had endless playtime with his best friend and his older brother (two friends for the price of one!), they went swimming, played video games, pretended to be super heroes, and ate pizza for dinner and McDonald's for breakfast. Yup. Heaven. He actually told me that it was "THE BEST DAY OF [his] LIFE!" I was fully expecting a phone call to retrieve him at some point in the night, but nope. He did it. And he loved it. My little guy, he's growing up every day.

Spring Break: Part Two Still Alive

So far:
Space Center
Mini Golf
Bowling
Go Carts
Chuck E. Cheese
Plenty of sunshine

Up next:
Playdate with best friend
Fun with cousins
ZOO!
Easter at OUR HOUSE. Ack.

Happy anniversary, KayTar!

This is a very special anniversary for KayTar. This day last year was the day she finally, FINALLY walked, after 25 months of waiting.

She and BubTar were out on the trampoline, Josh was in the kitchen with the back door open, listening for the kids and keeping an eye on things, I was off doing something, I can't remember what.

Josh called me and said, "SHE JUST WALKED ACROSS THE TRAMPOLINE!" (I have to use caps because he was definitely speaking in all caps at the time)

I said, "Whatever, you liar. Stop joking around."

And he said, again with the caps, "NO REALLY! SHE DID! SHE DID IT!"

With that, the little squirt stood up and darted forward with a drunken, wobbly stumble. I nearly peed my pants as I darted to get my camera.

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And by that evening, she was doing it on solid ground, too.

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What can I say? At the time, it felt like the very best moment of my life. The miracle of my slumpy baby standing and walking, finally, was more than my heart could stand. It was amazing. It is definitely in the top 4 moments of all time, right up there with marrying Josh and seeing my babies for the first time. It has been a wild, wobbly year, complete with an ER trip on Mother's Day for a bit of dermabonding, but it has been miraculous to watch her grow and change and learn how to walk on her own two feet.

March 2007

March 2008

Spring Break: Part One

Last year BubTar's spring break was preempted by a hefty schedule of therapies for KayTar. This year she is without said therapies, so we are taking advantage of it and having a super fun break to make up for it.

Today was day one of Operation Make Up for Last Year's Crappy Spring Break and we went to Space Center. We were limited in what we could do because of the little 'Tar, but neither of them seemed to notice or care. Everyone had an excellent time and BubTar was sure to thank me for taking them somewhere so cool. He knows we are going somewhere else tomorrow, but I won't reveal the secret just yet (mostly because if I do, he won't stop talking about it for the next 24 hours).








And the very sweetest part of my day...



I will probably be a bit absent from the Blogosphere this week, since we have outings planned for each day. I'll still be posting (lightly), but my reading will probably take a bit of a hit. Try not to write anything too interesting in the next few days, okay? Thanks.

PS: I had a great time this weekend, I'll post a few photos once someone emails them to me...I was the dolt who forgot to bring a camera!

The morning after

She survived.

We survived.

We were up way too late. WAY TOO LATE.

Josh said, "KayTar! That was one of your best episodes yet!" I looked at him, fairly confused, as it was her longest episode in quite a while and the only one we've had to give her double doses of meds. He clarified, "Well, it wasn't THAT painful, and she's right back to normal. No more regressions." And that really is a win, because when your kid is still only eating maybe 3 chips a day or maybe on a really good week 1 veggie burger once a week, there really isn't THAT MUCH room for further regression. We're happy to keep our status quo.

It is done and the clock starts again.

Today, I'm going on a road trip with Julie and her tiny little mouse car, thoroughly pleased that the clock has been reset and I can put my worries aside again, at least for 73 days, I hope.

73.

We were at part two of her autism evaluation.

I was watching her play with the psychologist and then she stopped.

She looked up and she stopped responding.

She whined and rubbed her eyes.

I stopped breathing.

She looked at me and whined again, but then her eyes danced away.

She put her head on the table.

My heart raced.

"I think she's having one of her episodes."

We watched her, unsure, as always. Is this really it?

I heard people talking, "Did you see how eye contact completely changed?" "Yes, her whole demeanor changed."

I watched her, tried to engage her. She responded, weakly. She pointed at the toys, but she was too weak to even raise her head.

We left with promises of rescheduling.

As we walked to the car, she whined and retched.

I tried to ask her questions, reassure her. She tried to respond, but all that came out was gibberish, mumbles and groans.

The ride home was uneventful, a bit of groaning and moaning, more retching.

We walked in the house, I went for her medication.

After giving it, I put her in the sick seat.

She cried, vomited bile from her wee empty stomach, and fell asleep.

She's resting now, beside me in her sick seat, occasionally stirring and crying out, letting me know that she is about to vomit again.

I go to her quickly, hold her head over the basin and whisper soothing words to her. I don't know if she understands me or even hears me.

I worry and I wait, willing her to return to me, always hoping that this might be the last time I have to watch her slip away, the last time I have to watch her tiny body be wracked with pain* that threatens to swallow her whole, the last time I have to wonder if she truly will come back to me.


* Thankfully, this one is not that painful. She is resting comfortably in between bouts of illness, but I'm always worrying about the next time.

ETA: It's over. 8:45am-5pm. About 8 hours.

My kid IS weird

Today was part one of KayTar's autism evaluation through the district. I think I feel a bit differently about these little evaluations than a lot of other parents. Generally, people seem to be uncomfortable with the idea of their child be judged or graded for defects or deficits. Many parents shy away from labels and limits, they don't like to watch their children be scrutinized. But me? I love it, in a strange way. I love watching KayTar and the evaluators interact. I love listening to her answer questions (in sometimes hilarious ways, "Where do you sleep?" "IN A BOX!") or throw out her little quotes and watch the evaluators react ("This bowling ball is CHEAP!"). I love the way she always, always gets them to smile and laugh (The SLP told me that if she had her at home she'd never stop smiling). I love the way she charms them. And honestly, I love having my suspicions confirmed.

KayTar is one hot mess of a puzzle, not only medically, but also behaviorally. She is not a neat and tidy package of anything. As her mother, I observe a great many things that the general public misses, even trained professionals miss these things if they don't interact with her for adequate periods of time. I'm constantly dissecting things, researching things, wondering about behaviors and patterns...my brain is always processing some little tidbit of information I've gleaned from her. It can be tiring and a little maddening, too, especially when so many other people miss it at first glance. But to sit in these meetings (which I am an observer for, not a participant) and see her do the same things for them and to watch them catch on to it, without me saying a word, is like one 4 hour long sigh of relief. They get it. They get her. They see the problem areas, the lack of understanding and comprehension, the inability to tell stories or join in socially, the way she tricks people with her speech, and so on. They know how she covers her deficits and they know how to get her to expose the problems. It is an amazing process to witness.

She did a great job today, she was exactly herself. She did well at the things she does well at (above age level for quite a bit of stuff) and she showed deficits where deficits are. I never felt like she behaved out of character or failed to do something she really can do, which means it was successful. I won't know anything solid for quite a while. We go back on Friday for a "play test". Today was formal evaluation testing, the next session is more play based. Then there is the home visit, then the Big Meeting, which is when we should know. I did ask the SLP, "So, did you see what you expected to see?" and she said "Yes." So, I suppose that is a good thing. I'm anxious to get the results, not because I'm afraid of what they might say, labels tell you nothing you don't already know, but because I am so curious about what they'll categorize it as. I'm pretty sure they won't call it KayTarosis, but I think it has a nice ring to it.

69

First, if you are looking for my BSM, follow this little linky-loo over to my new photo blog! I've been playing around more with my photos and such and wanted a place to explore than without totally over taking this space (which I still desperately need), and thus, Photos from the Journey was born. Go take a peek if you have a chance!

Second, it is a Big Week here. We are on day 69 without an episode. 69 is the current heavyweight champ for days without an episode, so that means this is the week. Today, tomorrow, maybe in two days...but it is coming. This waiting is even MORE fun because tomorrow is her BIG AUTISM EVAL with the district. 8:30-12:30. 4 hours of evaluation. Of course, I'm worrying about having to cancel and miss out on this appointment slot, thereby keeping her out of school and services for the remainder of the year. On top of that one, we have a second, shorter evaluation on Friday. That is two days in which an episode would be bad news, not that they are ever good news. I am also planning on a super fun roadtrip this weekend with a friend, to see a couple of crazy Canadians, and I'll have a pretty hard time leaving if she hasn't had her episode yet. I think it would kill me to be a few hours from home when she was going through that. It doesn't matter how many she has had (28, if you're wondering) they always make my heart stop and then race uncontrollably. There is just something about watching your child slip from consciousness that you can never adjust to. The question is always, will she return to me?

Third, I have a phone interview with someone from the CDF this afternoon (it was rescheduled from last Friday). Dare I say it? I am hopeful that they might be able to help us with this horrid insurance situation. Regardless, this week I got my basic cardiac life support certification (because it looks purty on my resume) and I'm still putting in applications and hoping for call backs. In a few weeks, I'm going to take advanced cardiac life support (which looks even purtier on the resume) and I am really excited about it. I get to learn all the fancy life saving stuff in that course! I hope a solution finds us one way or another, even if it means I sleep a whole lot less for a while.

Uncovered Treasure

Look what we found hiding beneath our carpet!





I left for my BLS certification class yesterday with a carpeted bedroom and returned to beautiful hardwood floors. Very nice.

This guy...

would like to be interviewed, too, so please leave a question for BubTar in the comments. I'll record the interview and post it sometime next week.

Thanks!

Reader Rabbit

I recorded this yesterday and I figured it was time for some lighter fare around here.

In advance, I must apologize. There is a portion where she keeps saying "dinosaur's dinner" and I continually correct her. Guess what? I WAS WRONG. As soon as I put the camera down I saw where it said "dinosaur's dinner" (last two words of the summary paragraph) and I felt terrible. So, basically, she's smarter than me.

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PS: Last day to ask me questions! I'm going to be working on getting that post together, so lay them on me!

ETA: I kind of forgot my new readers might not know about this little ability of KayTar's. She's been reading since she was about 27 months...or at least that's when WE realized it. She might have been capable before then. It is called hyperlexia and we think it is probably caused by her processing differences, but it still knocks our socks off. If you want to see how we discovered it, you can look here and here and also click on the tag at the bottom marked reading.

I made someone cry yesterday.

Last night, at the end of anatomy lab, I was sitting with my new friend and helping her review the foot bones one last time when she asked me about KayTar. It wasn't out of the blue, I've mentioned KayTar a handful of times. I've made comments about shuffling her to and fro various places and I've given the short and sweet "She's got some medical and developmental needs." explanation. But last night she said, "So what exactly is going on with your daughter? Is it something genetic? Is she behind her age group?" And so I gave her the shortest version of it I could manage.

I told her no one is sure what is going on. She's delayed, but brilliant at the same time. I told her she can't run or jump or climb stairs, but she pulled one of my novels off the shelf the other night and sat down to read it. I told her she is deaf in one ear, and that she doesn't really eat. Pediasure is our best friend. I told her she didn't walk until she was over two and used to have the cutest red walker. I told her that KayTar's joints are too loose and her muscles are a bit floppy. I told her she has sensory processing problems, that innocuous stimuli is often misinterpreted as dangerous and offensive. I told her she has little lesions in her brain, areas of demyelinated tissue for unknown reasons, maybe a congenital virus. I told her she's had MRIs, CTs, LPs, EEGs, and probably most of the rest of the alphabet, too. I laughed. I told her she is doing well, though, thriving in spite of it all. She's come much farther than we ever thought. She's in therapies and it is making such a difference.

My friend said, "You must have amazing insurance coverage."

And I told her that we used to, but we just lost it. I explained why we couldn't find new coverage and her eyes filled with tears. She said, "You think you have it bad, and then you hear someone else's story..." I tried to make her feel better. I told her we're okay, really. Because we are. I said, things have been worse...at one point we had nasty possibilities on the table for KayTar. We thought it might be a tumor. Once we found the lesions, they thought leukodystrophy was a possibility. She's alive and she's thriving and everything else is gravy, I said. I told her the biggest hit was losing the private therapies...but at over $350 a week, we just can't continue them. But I told her we have some possibilities on the horizon and things might work out to get her back into therapy at low or no cost. She told me, "We just lost our coverage and my kids have asthma, sometimes they have attacks and the bill can be like $300, but it is nothing compared to what you guys are looking at." Her eyes were still red and wet, I think that mentioning the fact that in the early days we thought she might die wasn't as soothing as I thought. She said, "How old are you anyway, 24, right?" I said yes. She said, "I was 25 when I had my first baby and here you are taking care of all of this, and you've been doing it since 21, and even younger with your son? That's a lot." I agreed. It is a lot, but it is normal for me, for us. It just is what it is. The insurance thing sucks. But the rest? It's just life. And she really is thriving. It is amazing. If you met her, you might not even realize anything was different, save for her wee hearing aid. Again, I told her we are fine, because she still had those sad reddened eyes, moist with tears.

And then we reviewed the foot bones once more, because life just goes on.

Yesterday...

Yesterday, I woke up and look at my blank calendar and didn't know what to think. Do you know how long it has been since we had an entirely blank weekly calendar? There was one week in November of 2007 that was blank, and one week in October of 2006 that was blank, and before that was the last week of August in 2006. The week prior to her ECI evaluation. We have had only TWO blank weeks since then. Two empty weeks in the span of one year and six months. Two free weeks out of 78 of them. I don't know what to do with an empty week anymore. I wondered how many empty weeks might stretch out before us until KayTar once again has the services and care she needs.

Yesterday, I received a phone call from the school district. They can get us in earlier, next week actually, which is such a relief. This week I have a phone interview. Next week, KayTar has two additional evaluations (not to mention our social security meeting), and in two weeks, they are coming for a home visit.

Yesterday, I called our local university to inquire about their speech program. They are sending out a packet for completion. KayTar will likely qualify for their summer program, which means she might not have to be without services this summer.

Yesterday, I sent emails out regarding our insurance situation. Someone almost immediately replied from the CDF. If you'd like to see some interesting statistical data regarding uninsured kids, visit that link or the one on my sidebar. I don't know if anything will come from this, but what does trying hurt? If no one can help us, well then, things will just stay the same, but if someone can help us? Then it is worth the tiny effort of sending off some emails. They are calling me for a phone interview this week.

Yesterday, I completed an application for the Shriner's Hospital. I need to run it past our pediatrician before sending it and I'll likely call the hospital today to make sure they do see kids like KayTar (she is considered low needs in the orthopedic department), but I finished the application regardless.

Yesterday, I found a way to fill the blank space on the calendar...working to make sure that these empty spaces are only temporary. As much as I enjoy the down time, it means my sweet girl isn't getting everything she needs, and we just can't have that.



PS: I'm still accepting interview questions. ;)

Baby Redwood

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PS: There's another post from today down below!

On the last day of insurance...

We missed our final speech therapy appointment, because a certain little Tar is sick and feverish. I was bummed, because she is now without services until the district gets it together. Her speech therapy alone is $165 per week and OT is another $230 and we just can't shell that out on a weekly basis.

We went to the pediatrician, the 5th doctor we've seen since last Thursday.

We refilled standing prescriptions so we have extra on hand during this limbo period.

We spent $35 on these things. Without insurance, it would have cost just a bit over $100.

On Monday, and every day after until we find a solution, any day like this will cost about $100, more depending on if there are shots or antibiotics or any other medications involved.

If KayTar decides to play that little game we all love so much, you know the one, Dehydration Roulette, not only will we have to worry about the hospital. We'll have to worry about paying for the hospital, too. Fuuuuuun.

On to the roundup...

Thursday: Genetics and Neurology

These visits were actually extremely heartening. Everyone is thrilled with the progress she's made in the past 6 months. The geneticist didn't order any tests, because as our neurologist said, she has had The Workup. He doesn't have any leads right now, so no blood work. Hooray! The geneticist did, however, strongly recommend a thorough behavior/autism evaluation with developmental pediatrics. This wasn't a shock, of course, because it is now a frequent refrain. The neurologist agreed it is a good idea. She has these quirks that do fall on the spectrum, so I'm fine with the evaluation. With KayTar, autism is never going to be the root cause of anything. It might be a handy way to categorize some of her processing differences, though. The pediatrician and I both agree that if it helps facilitate her services, it is just fine. The most excellent news is that we don't have to see genetics for a FULL YEAR! Technically we can wait until after her fourth birthday, which sounds amazing. Ahhh. The neurologist agreed that she looks great, said we should keep treating her episodes the same way, and noted that her eye was drifting inward when tracking objects. We see him again in 6 months.

Monday: Pediatrician, well-check

She weighs 30 pounds! YAY! She is growing perfectly, despite her diet of Pediasure and chips. She is 37.5 inches tall. Everything growth-wise is just right. She still has some delays, but overall she's doing amazingly well. She's really come much farther, much faster than we ever thought she would. It has been amazing to watch and it has been fun to share that excitement with the people who have been helping us take such good care of her. The pediatrician noted the eye drifting as well.

Thursday: Ophthalomology

Bah. We are always disappointed with the results of these appointments. They always feel rushed and she always says "Everything looks great!" Anytime we ask about a problem that we've noted, she turfs us back to neurology. It has been frustrating. But I thought if both the neurologist AND the pediatrician have seen the drifting, just in the last week, she'd catch it. But nope. She said she saw nothing and sent us on our way. In fifteen minutes of our arrival. I drove an hour and a half for this appointment and I left feeling decidedly aggravated. It was our last ditch effort to get it looked at before the sand ran out of the insurance hourglass and it was wasted, really. It isn't something that I mistakenly noted as a layperson/parent. It is something that two of her doctors noticed and brought to my attention. I feel certain that there is something going on there and I don't like it being disregarded out of hand. Like I said, bah.

Friday: Pediatrician sick-check

She puked in the waiting room. FUN! I caught part of it in my hands. MORE FUN! Another mother kindly ran to get me paper towels so I could clean up a bit. I wonder how many other kids have puked in that waiting room, which begs the question...WHY IS IT CARPETED? It must be a delightful haven for multiplying bacteria. Her throat was red, so we did the obligatory strep swab. She puked again. This time on me and her pants. Mmmm, the aroma of mucus and partially digested milk. The strep screen was negative, YAY! So it looks like a run of the mill upper respiratory virus. We're just doing her breathing treatments and keeping her fluids up. Oh, and her appetite stimulant is also an antihistamine, which means we FINALLY have something we can give her for congestion and she isn't stuck choking and puking in her bed at night. Thank God for compounding pharmacies.

That's it really. Fairly inconsequential. Next month she sees the feeding specialist, so if insurance isn't worked out by then we'll have to pay out of pocket. The following month is her ABR (hearing test), same story there. I hope we find a solution before then. I'm applying for night jobs. We have an appointment with social security to determine if she is eligible for disability, but it seems like a long shot. We'll see, and if we get anywhere I'll be sure to update.