Sick Shnook

My little shnook has been sick the last couple of days.  The usual fever and diarrhea…yuck.  We had planned on taking our family to Galveston for a few days to see the Festival of Lights (which I think you would love) and a few other attractions, but because of your sickness we have changed plans.  If you remember, the exact same thing happened this time last year!  We will try again in 2012.   

For now we are opting for a staycation.  We will do the Children’s Museum, maybe the Downtown Aquarium…those sorts of things.  I wish you weren’t sick, but I am more excited about this option.  We are saving ourselves the hassle of packing, the risk of being further from the hospital, and lots of money.  While we will accept this as a blessing in disguise, I am praying you get to feeling better quickly Audrey Boo!

December Miracle

You won’t believe it.  Last night you and Liam both slept through the night without waking to be sick or go to the bathroom.  So Daddy and I got a second uninterrupted night’s sleep!  A girl could get used to this, though I won't get my hopes up.  I don’t expect this to be a regular occurrence, and even if it was we are about to throw a new baby into the mix.  But it was FABULOUS and I am grateful.

Like a Rock

Last night we had a late Christmas party, and this morning an early OB appointment, so you and brother spent the night at Grammy’s house!  That’s a special treat.  You cuddled with Papaw while Liam and Grammy went on a long walk.  It sounds like you slept as well as you usually do and had a great time.

As for Daddy and me, we haven’t had such a great night’s sleep in about 4 years. On average we wake up 3-4 times a night between you and Liam, so to get an uninterrupted 8 hours was heavenly. I slept so hard that I didn't dream, I didn't MOVE--I wouldn’t have thought it physically possible, but I didn’t even wake up during the night to go to the bathroom.  (That almost backfired the moment I awoke to the alarm clock.)  Neither of us can remember ever feeling so rested.  I told Daddy that if we could get a solid night’s sleep like that a few times a year, we could probably function on a whole different level.  My senses seem…sharper today.  My brain clearer. My reflexes quicker.  My decisions better.  My energy much higher.

I might be exaggerating slightly…but only slightly.  It is pretty remarkable what some REM sleep will do for a body!  Thanks Grammy for this unexpected gift!

School's out!

Today was the last day of school for 2011! Honey, Liam and I came to pick you up from school to go to the doctor. I know. I did that for Thanksgiving break also. Sorry. I thought it was going to be fairly painless; I just wanted to touch base with Dr. L before Abbey arrived. I was surprised when she offered a pneumonia vaccine—I didn’t even know those existed. So we went ahead and got it. And my big brave girl, you didn’t even make a pouty face. You always amaze me with your toughness!

We talked a lot about your diet. You gained a little weight, but have a long ways to go. I am going to start adding a half ounce of water to each of your feeds. The hope is to switch that half ounce to milk once your stomach stretches a bit. We were given samples of three types of new formulas, just to see if you tolerate those better at all. A huge long shot, but at this point we are willing to try just about anything.

The office gave you this pink blanket with an "ephant" and your brother this race car. He was one happy boy.

We also did some blood work: cholesterol, and a whole bunch of vitamin levels. It took some poking around but we got blood in one stick and you only started complaining at the very end. Still no tears.

Now that’s all taken care of, bring on the Christmas cheer! 

Puzzling Ears

Have I ever told you how you and your brother have puzzle piece ears?

You have always had a little chunk of your left ear missing.  An angel nibble I guess.  And then your brother was born with this:

An extra fold in his left ear! Isn't that cute?  (And maybe a smidge weird?)

Stand by your man.

Bub likes to help entertain you while you stand.

You like it too.

Be An Angel

Today you came home from school with a sack of wrapped gifts. They were from an organization called “Be an Angel” that provides, among other things, Christmas gifts to children like you. They know how expensive this life can be and that gifts may not be something families can afford.

I am so touched by the gesture. I love organizations like this, and I am in no way opposed to you receiving gifts from others. But we are amazingly blessed. God put us in touch with the right people from the very beginning so we were able to get the funding for all your medical needs. Unlike many other families in our situation, we can provide Christmas gifts for you even though we choose keep it simple and focused on Christ. I imagine that if our budget made that decision for us, it would be very difficult as a parent. So knowing these presents were picked out, purchased, and wrapped with the intention of providing relief for a family in need, you and I talked about passing these gifts on. We agreed that some mommy and daddy who don’t have anything else to put under their tree will be so happy to give them to their child.

I think that is such a big decision for my little 3 year old to make. I’m proud of you for sharing.

You can read more about  the "Be An Angel" organization here.

Wardrobe Woes

You, my love, are nearly impossible to dress. I am seriously, seriously struggling. In fact, I get more frustrated in the morning while looking in your closet to pick out clothes than looking in mine. And that is saying something. You are long enough to fit in 12 month clothes, but skinny enough to fit in 3 month clothes. Your head ideally requires 18 month clothes or buttons/snaps at the neck (although I have figured out I can slide things up over your tiny hips easier than over your head). On top of just finding a size that fits, is finding a style that fits. I am tired of shopping in the infant section for you. You are three years old, so I don’t want baby-ish designs on your clothes! Mema took us shopping and helped redeem your winter wardrobe. So far my solution for the colder weather is long “fitted” sweater dresses that look a bit loosey goosey on you. And with them I pair leggings which are tight enough on your thighs so that they don’t slip off despite being baggy around your waist. Next year I am afraid my only option will be learning to sew. Anybody who has seen me attempt to draw a straight line knows that cannot end well.

A Little R&R

Thanksgiving break was great; very low-key with not a whole lot to report. Each morning you didn't wake until about 9:00--just like a big kid sleeping in when school is out!  Wednesday you enjoyed Toddler Time at the library. Liam was excited for you to be there also.  Thanksgiving day itself was relaxed and restful, as was Friday through Sunday. We couldn't ask for any more than that!
Next up...Christmas vacation!

You love cuddling with Daddy!

Seriously...what could be better?

Thanksgiving Day lunch.

Watching Daddy and Bub put out Christmas lights.

Turning on Christmas lights for first time!

Fall Break!

You are so cute!

 Today you arrived home off the bus in this Thanksgiving hat (I guess technically headdress) and officially kicked off your vacation from school.  First on the agenda…flu shot. 

Naturally Liam had to try it on also.

I know.  Not fun at all.  But necessary nonetheless, so off we went.  After an almost two hour wait just to see the nurse, she tried telling me we couldn’t have the shot since you were allergic to eggs.  So around and around with her I went.  You have gotten the flu shot every year since you were born and never had a problem.  Your allergy isn’t severe…Bub is much more allergic than you and he did just fine with the shot.  And now they are saying it is such trace amounts of egg, it won’t affect those with allergies anyway.  On top of all that, I would rather deal with hives or minor vomiting from the shot than the actual flu.  I had the flu last year and felt like I was on death’s doorstep.  I can’t imagine how you would manage.  So she went and got Dr. L who said you could have the shot, but asked that I stay 30 minutes for observation.  I said no.  She said ten.  I told her she was pushing it.  After 5 she asked if we had our EpiPen and let us loose.  (I love that lady.) Whooo-hoo, now the fun can begin!

I’m looking forward to having you home for a few extra days this week.  Tomorrow we can leisurely wake up without rushing to get you on the bus by 7:30.  Of course, I’m betting you are awake at your usual 5:00.  It’ll be nice to stay in our jammies awhile regardless.

It's the little things...

I realize that something as simple as your name prettily monogrammed in pink on your suction bag should not make me this happy.  Thanks Glitterbugs!

Haiku for Aunt Paula

For over three years,
You said humidifier.
Now Audrey sleeps well.

Thanks.

Girl's Morning In

Today our family chose to divide and conquer. Liam and Daddy went out to do manly things…things like oil changes, new car batteries, and modern day hunting and killing of dinner (AKA bank and picking up a couple ingredients from the store). You and I stayed home and did domestic things…things like baking cookies, folding laundry, and organizing every drawer in the kitchen.

We all had a 100% success rate, and enjoyed our roles. It’s like God knew what he was doing when he made men and women different.

And can I just say, it was shocking how much I was able to do with just you at home. I know we had 16 months to ourselves before Bub came along, but in the last two years I have forgotten just how productive we can be while talking quietly, singing, and wheelchair dancing. We need to make more time for just us girls.

Loquacious Lady

You are so talkative this week! From early in the morning until bedtime, you jabber away. All your daily reports from school this week agree…“lots of vocalizing”. Not only are you talking more, but also more LOUDLY.


More than once has Bub woken you up by yelling for me to come get him after a nap. But today was a role reversal. You called out with so much force that I heard it clear across the house and it scared me! By the time I got to your room, Liam was awake next door. I never thought I would have to have an “inside/outside voice” conversation with you—and I love it!

Report Card - 2nd 6 Weeks

It’s that time again! Report card! Remember your goals from last 6 weeks? This 6 weeks you met all those goals with 2/3 mastery in each area! Miss C wrote under comments:

“Audrey is AMAZING! She loves school and participates in everything. She has mastered her IEP’s this grading period and if this continues I will change/increase the difficulty levels to offer a challenge for this gifted student.”

ALSO…..(drumroll please)…...I received this email from her:

“Just wanted to let you know that Audrey has ‘won’the Knight Award for this 6 week period. I decide which student is the recipient based on attendance, performance, awake time, and cuteness! It’s always very hard to make this decision as all the students are cute and work hard. However, this time Audrey is the winner. The blue dog tag is her token gift (found with her report card) and her award is posted in the hallway. I will send the award home after the next 6 week period.

Go Audrey!

Miss C”

How cute is that??

A Baby Story

As I was writing on your sister’s blog about my OB appt, I realized I have never written about your birth story.  I guess there was so much else to focus on as soon as you were born.  But never you worry.  Those memories are fresh as can be.

Daddy and I went to the hospital the night of June 8^th-- --a week after your due date--to start the induction process.  We were supposed to arrive at 7:00, but got there closer to 11:00.  The entire time I was pregnant with you I didn’t expect you to come on your own, so I never packed a hospital bag and was scrambling at the last minute.

By midnight I was checked in, had my IV for Pitosin and they applied the Cervidil. My progress at that point was exactly zero.  I mean ZERO.  No indication that a baby would be coming anytime. Ever. Daddy and I fell asleep fairly quickly after all was settled.

Contractions woke me up at 4:00am and I might have gotten small snippets of sleep until about 8:00 when Daddy woke up.  By 9:00 my contractions were getting intense and started asking for the epidural.  My bloodwork showed that my platelets were low, so I was told I had to wait about an hour and recheck them before I could get my epidural. I have no idea at what time I was which centimeter (ok, so maybe the memories aren’t fresh as can be), but I felt like I was progressing fairly quickly.  My contractions were two minutes apart and lasted about a minute.  An hour later my platelets were still borderline.  By 11:00 Dr. S came to check on us and was appalled I didn’t have an epidural yet.  She said that if I was borderline then that was all the more reason to get it as fast as possible, before they dropped too low.  The anesthesiologist arrived immediately after.

From then on I was sitting pretty.  Dr. S broke my water and we all just sat around visiting until it was time to push.  In the room was Grammy, Honey, Mema, Shelby, Grammi and of course Daddy.  About 1:30 it was time to push!

And push and push and push, push, push.  I pushed so long and so hard, that I began to lose consciousness for the minute between each contraction.  As the contraction started up, I would wake up and this is how the conversation would go:

Me: Is it time?

Nurse: Not yet.

Me: I need to push.

Nurse: Not yet.

Me: I’m pushing.

Nurse: Ok.

As each contraction faded, the lights and the sounds in the room dimmed to nothingness. A minute later I would wake up as the contraction intensified.

(I'm glad someone's having fun.)

About 5:00 Dr. S came to see why we weren’t progressing.  She asked the nurse how long I had been pushing, and the nurse said 2 and a half hours.  Dr. S was not ok with that and said we needed to get you out immediately.  But our family who nearly required stadium seating knew better—it had been three and a half hours.  (Let me digress here to say our nurse really was fabulous.  Super sweet, didn’t mind the crowd in the room, very gentle and caring. She was a traveling nurse, just coming back from a stint in St. Lucia where Daddy and I got married!) Dr. S called for the foreceps. I said “No, please, just tell me what to do.” So she tied a knot in a sheet and told me to hold onto one end.  She held the other, and leaned back so that I was supporting her weight.  At least that’s how it appeared from my bed; really, she was supported by her leg behind her.  But since I thought letting go would drop the doctor on her rear, I held on for dear life.  Several pushes with this method later, you were here! 5:33pm, 7 lbs and 3.5 oz, 18.5”.

 
I expected labor to be difficult, so I didn’t think the whole ordeal that terrible. I figured epidurals barely took the edge off and that it was normal to push for hours upon hours.  It wasn’t until later that I found out that you were sunny side up and a brow baby.  Meaning the widest part of your head came first instead of the narrowest.  This was a rough (and true to Audrey fashion, rare) way to deliver for you and me both—almost always done by c-section.  When you left the NICU at 9 weeks old, you still had the scabs from scraping your face on my pelvic bone the entire way down, and I was still recovering in my own ways also.  Sixteen months later I found out how a “normal” delivery goes.  What a breeze! After 20 minutes of pushing and almost no pain, your 9 lb, 4 oz brother made his entrance into the world.  I could do that every day!

There was meconium in the water, so we knew you would be taken out and suctioned immediately.  Still, when I saw your face for the briefest of seconds, I knew something wasn’t right. I had a supernatural peace while I was being cleaned up and waiting for you to come back.  That time is pretty fuzzy.  I remember people talking around me but being quiet myself, not sharing my suspicions.  About 30 minutes later Dr. S came back in with another Dr. S who would become your neonatologist.  She said you had some concerning features—cleft palate, extra finger, clubbed feet—and that they expected an underlying condition.  You were stable but needed to go to the NICU to run more tests. Grammy then said something to the effect of “But she is going to be ok, right? This isn’t anything fatal.”   New Dr. S just answered, “We don’t know.  We need to run more tests.” (He too is a very caring and compassionate man.)

They brought you in for me to hold for a quick minute before taking you to the NICU.  Daddy went with you and the time he was gone felt like an eternity. 

(You don't even look like the same baby now!)

Thus began the longest night of my life.  I wasn’t allowed to get out of bed until 6 hours postpartum, but at 11:30 was shift change.  So Daddy took me upstairs to see you for the first time around midnight.  He rolled me up in the wheelchair to a bed warmer, and I stood up, walking tenderly and lovingly towards it.   Then I heard Daddy: “Uhh baby? That’s not ours.  She’s over here.”  Oops. (But seriously. He parked me in front of the wrong bed! I let it slide knowing he was as tired and heartbroken as I was.) I held your hand and cried—I don’t know how long.  But I do remember wailing into Daddy’s chest at 3:30 in the morning while he squeezed into my bed with me. At some point sleep must have relieved me from my exhaustion and shredded emotions.

Those first couple days were really just a flood of tears and heartache.  But looking back it amazes me how quickly we were able to find joy in the small things, laugh easily, smile throughout the day.  A lot of that can be attributed to falling in love with you, but most was just a God thing.

People always tell me how strong we are.  That they wouldn’t have the strength to go through something like this.  Sweet sentiment, but absolutely ridiculous.  If someone was to have asked me the day before you were born if I could handle this, I would have said no way.  And that would have been true.  God gives us more than we can handle all the time…that way we have to turn to Him to handle it for us. So on the day you were born He held my heart to keep it from shattering, strengthened me so I could keep moving forward, gave me the ability to understand the information the doctors found, and created in me the organizational skills to keep up with all your paperwork.  God really is good, ALL the time.

First Fest



Meow!




You liked sitting on the edge of this bounce house--in moderation.



In the toddler room they had a path of packing bubbles laid out to stomp on! Such a great idea!

And the results are in...

Dr. G just called.  The biopsies turned up nothing.  Which is great news, except we are no closer to figuring out these little episodes than before.  So now our game plan is to just wait until the next time we find blood and then insist the ER call Dr. G to scope then and there. You sure are a mystery chica!

Hello Kitty!

When we left for Trunk or Treat yesterday afternoon, you felt pretty miserable. Things didn't improve too much as the night went on. You absolutely refused to smile for anything. You can read about our attempts to get a good picture on Bub's blog HERE. So in lieu of a Trunk or Treat picture from last night, I am posting a picture of you after school today. Cutest kitten I know...

Colonoscopy/Endoscopy/Glaucoma Exam

In some ways the colonoscopy was probably easier for you than it was for an adult:
*You didn’t have to actually drink the 32 oz of bowel prep—I just pumped it in.
*You didn’t have to stay in the bathroom all day while it worked—I just constantly changed your diaper.
*You don’t mind missing a few meals—the consensus is you probably don’t feel hunger.
*You weren’t at all conscious for any of the procedure—general anesthesia.

But in other ways it might have been tougher:
*32 oz in an hour is what they expected. It took 8 hrs and you still threw quite a bit of it up.
*Despite the diaper changes every 15 minutes or so, your diaper rash was ugly.
*You cannot afford to miss any meals. Seriously.

We arrived at 6:30am and waited until about 8:00am for your turn to be taken back. I was getting nervous about your IV stick. Overnight I did my best to keep you hydrated during and after the bowel prep, but I had to stop fluids at 4:30am. I’ll never forget the time it took 28 tries to give you an IV because your veins weren’t plump from dehydration. What a nightmare.

In my experience, anesthesiologists are notoriously confident, often to the point of arrogance. I always give them a laundry list of complications from past surgeries so that they know exactly what lies ahead. Not much frustrates me more than when one shrugs me off, assuring me that it won’t be a problem for HIM. As if he or she is somehow immune to your irregular airway or tiny, shriveled, rolling veins. Without exception those doctors have come back to me with a story about what a hard time they had getting you prepped for surgery, and all the excuses why.

So when I spoke with the anesthesiologist, I was bracing myself for that prideful attitude that drives me crazy. I was pleasantly surprised when he listened to all I had to say, asked questions and then followed through with being as prepared as possible. He had a fiber optic scope in the room, asked the on call ENT to be ready to help, and just made a point to be well-informed. And wouldn’t you know? After the procedure that man humbly told me he got your IV on the first stick and had no problems with intubation. Not only that, but he said he can see why other doctors have had difficulty, and advised me to continue stressing these issues to future anesthesiologists because the next time might not go as smoothly. I am definitely requesting Dr. J for the any other procedure we have done. Amazing what difference attitude makes.
As for the findings, nothing significant. Your glaucoma is under control and pressures are fine with the meds. Dr. C did see that your optic nerve is more open than last time. At least, I think that’s what he said. I was sort of wrestling with your brother when the doctor came to speak with me. I need to call his office for a quick biology lesson. But he prescribed another daily eyedrop and wants to see you back in 4 months.

Dr. G didn’t find a whole lot either. He noticed that you had some linear creases in your stomach from frequent retching. Your stomach is compressed each time you vomit and it has resulted in these stomach wrinkles (totally my terminology—they are actually called gastro…something). He said these can be irritating but there isn’t anything to be done. Other than that, he saw nothing of consequence. Certainly nothing to explain the bloody stool and vomit from early September. He took biopsies from your esophagus all the way down to your bottom and those results are expected back early next week.

All in all, it was an exhausting day for everyone. You, Liam and I took a 3.5 hour nap when we got home at 2:00. Thank goodness it’s the weekend so my littlest trooper can rest up!

Crazy Sock Day!

Prepping for Friday

Tonight we start your Pedialyte diet until your colonoscopy/endoscopy/glaucoma exam on Friday. (Whew! Talk about multi-tasking.)  Tomorrow afternoon we will begin the bowel prep.  Your diapers are somewhat normal these days, so I am a little concerned that this cleanse and exam will throw us into irregularity again.  But you constantly surprise me at how well you bounce back from these sorts of things.  I bet you do beautifully.

Bed Crashers

Liam and I went to Austin this weekend for Aunt Lesley’s bridal shower while you stayed home to help take care of Daddy. It sounds like your time was full of snuggling and relaxing. I know you missed us, but was it a nice break? Just to have some peace and quiet for a full day? Next time I vote we send the boys off and you and I enjoy a girl’s weekend.  You in?

Bub and I got in about 9:00pm on Saturday night. We all assumed you were asleep since Daddy put you to bed 45 minutes earlier. Maybe you waited up for us, or maybe you woke up at the sound of our voices. Regardless, we heard you calling for us and that's all we needed to crash into your bed to give hugs and kisses. Your R&R was officially over…and I think you were ok with that!

Not Sheepy

Lately you have been waking up at 5am every single morning. Why?? You don’t fuss, you just talk loudly in your room. Bedtime hasn’t changed, naptime hasn’t changed…what’s with the early wake-up call?

It really doesn’t bother me. As a mom I have an uncanny ability to completely tune you out while I sleep. Occasionally I wake up just enough to register that you are talking and roll over. But if you are in any sort of distress, I bolt out of bed and am in your room before my eyes fully open. So my frustration is more for you than anything else. I need to get you moving by 7:00 to have you ready on time. And pretty much without fail, you fall back asleep around 6:45. That makes you one tired little shnookie towards the end of your school day.

I would think that maybe you are just getting older and don’t need as much sleep. But I can’t keep you up much later at night. Daddy and I need to spend some time alone and we aim to be in bed by 9:30 ourselves. And I can’t take away your nap—not when you come home so exhausted each day.

So I guess we will just stick with our current schedule since it’s working well enough for the time being. Thanks for being so considerate and letting the rest of the house sleep. You are such a sweet girl.

Soy vs. Cherry

When we tried the cholesterol in soy oil, you could not keep it down. You went from throwing up once every few days to throwing up a few times every day. Nights were pretty miserable. I am fairly certain we checked for soy allergies a couple years ago but it came up negative. Maybe I am mistaken, or maybe an allergy has formed since then? Regardless, you could not tolerate it.

I thought that by switching you back to the cherry aqueous we would see an immediate and drastic improvement. I was right about immediate, but not so much about drastic. Things are better, sure. But we aren’t back to that sweet spot where we go days without incident. It takes your body much longer to adjust than the average person. Plus our trip to Dallas didn’t help—something is different in the air there that gave you a runny nose and a little cough. I am hopeful you will return to normal in the next week or so.

Welcome Home!

You had quite the welcoming committee when you arrived home from school today.  As soon as we heard you pull up Aunt Lori, Grace, Frank, Mema, Liam and I all came pouring out of the house to meet you.  Everyone loved seeing you get off the bus and thought you were the biggest of girls.  What a fun surprise for you!

Let there be sight!

I spent much of last Friday on the phone with the place we get your contacts from. It was so exhausting that I don’t even want to go into the details. But the short version is that because they didn’t properly file an insurance claim back in March or do their due diligence following up on it in any way, shape or form, they expected me to either pay $1000 or wait a month at minimum to get a new pair of contacts when you had zero. (Despite the length of that sentence, I assure you that is, in fact, the short version.) After researching the situation on my own and sharing my findings with the woman who failed to do her job correctly, she agreed to go ahead and order a new contact for your good eye immediately. She probably thought it best I didn’t ask to speak to her supervisor. I'll give her credit for that one wise decision. Today I got the call that your contact came in—I’m so grateful it is here in time for our trip to Dallas this weekend.

Still, we paid for it with $255 and a week of sight. We should get the money reimbursed but obviously not that week. Whenever you are without contacts I see a clear difference in your behavior. Even your teachers saw a difference—the first day of class after losing your last contact brought a “1” for tracking in circle time on your daily report. You have always gotten all 5’s before. I feel like we take a couple steps back when this happens, and it could take us months to regain that ground.  For that reason I need to be more diligent in checking throughout the day to make sure your contact is still in your eye.  And you need to be less diligent in popping them out.  Deal?

Report Card - 1st 6 Weeks

Today I found your REPORT CARD in your take home folder. I wasn’t expecting a report card!

It’s not your typical report card…no grades or conduct scores. Instead it marks progress towards your goals.

Here are your goals…a little humdrum to read but super important to document I think.

Audrey will respond to various tactile stimuli in 2 of 3 opportunities with no more than 3 verbal, tactile and physical reminders for 6 consecutive weeks in various supportive positions.
Progress: 2/3 trials—you did it!

In various supportive positions, Audrey will activate a switch for a cause and effect response using her hand in 2 of 3 opportunities with no more than 3 verbal, tactile, and physical reminders for 6 consecutive weeks to participate in various classroom activities.
Progress: 1/3 trials—well on your way!

In various supportive positions, Audrey will respond to various sensory stimuli in 2 of 3 opportunities with no more than 3 verbal and physical reminders.
Progress: 2/3 trials—success!

Under comments Mrs. W wrote, “Audrey has done beautifully this first 6 weeks of school. She is usually awake, alert, and eager to learn. Loves to smile and coo and melt our hearts.”

I give you an A+ Audrey Boo!

Cholesterol Update

I got a call from the pharmacy two Wednesdays ago letting me know that the pharmacist would track down the recipe and make your cholesterol in the cherry aqueous. On Friday she called back saying the recipe couldn’t be found and that she could “guess” how to make it but couldn’t guarantee its quality. Really?!? I barely knew what to say to that other than, “Uhhh…no. Either call a specialist for the recipe or I’ll just have our old pharmacy make it.” Tuesday I was told she was able to get the recipe and it would be ready Friday. My phone call to check the status on Friday afternoon apparently served as a reminder for the pharmacist to make the cholesterol and I wasn’t able to pick it up that evening. They were closed Saturday through Monday, so we will see if it is ready and correct when I get there this morning.


I’m not thinking this pharmacy is going to make the cut.

Sweet Sleep

Last night I heard you stirring at about 3am and started praying fiercely.  Every night for at least a few weeks has found Daddy and me in your room suctioning, changing and cleaning. It wakes Liam up too and has left us all ill-rested and frustrated. Next thing I knew, I was waking up again at 5:30 to your brother needing to go potty and Daddy needing to go to work.  Thank you Jesus.  We all needed a good night’s rest.  Let’s go for two in a row!  

And the winner is...

Today I got a note from your teacher and nurse saying that thanks to the “boxtops for education” we turned in, yours was a winning class for the first 6-weeks contest!  Your class prize was a big box of wipes and baby lotion.  I don’t know why I think that is so cute, but I do! It makes me feel like you are such a big girl doing these SCHOOL type things!  So now I’ve got the grandma’s collecting box-tops too. :-)

Down on the Farm

We went to Dewberry Farms yesterday. The two of us aren’t really the outdoorsy type, but we troop through for the guys. This day, however, was absolutely gorgeous and there was a briskness to the air that made it more than tolerable for both of us.

Pharmacy Woes

I had such high hopes for the new pharmacy I switched us to last week. When I originally spoke with the pharmacist she was polite, sounded knowledgeable and Christian music was playing as I waited on hold. Recipe for success right?

It took them two days longer to fulfill the script than I was originally told. Since they are closed over the weekend, this meant you went 5 days without your cholesterol. Strike one.

When I arrived to pick up the cholesterol, only 160 of 360 mls were ready. They didn’t order enough of the cholesterol to fill the entire month’s order. It’s inconvenient for me since they are out in Katy, but more than anything it concerned me about their calculations. How did they order less than half of what was needed? Strike two.

Then the cholesterol was in a soy oil solution rather than the cherry aqueous we always get. I know several choose the soy version, and I am not opposed to trying something new. But when I told her the medicine needs to be refrigerated, she told me it didn’t. I insisted it did, and she insisted I was wrong. Not only did she refuse to consider the possibility she might not be as informed about a medication she has never seen before and that I have been administering for three and a half years, but she spoke in an insulting and condescending tone. I am positive they teach that tone in pharm school. It’s an industry-wide standard. Clearly I am going to have to settle for a pharmacy who can get the medication right and just expect horrible customer service.

At this point I have asked the experts (the other SLOS mom’s) about the refrigeration issue and everyone agrees…it must be refrigerated and kept from light. I collected all of their answers and faxed them to the pharmacist as back-up with the numbers to contact the specialists if she needed further confirmation.

I’ll keep you posted. Ugh.

Scheduled!

We’ve scheduled your colonoscopy and endoscopy for the end of October.  It took some effort but we managed to coordinate these procedures with your glaucoma EUA.  Both require general anesthesia so I’m thrilled the doctors were willing to do them the same morning.  Plus you will only have to miss one day of school now!

Perspective.

Today Grammy, Liam and I visited your school. We met all of your teachers, a couple therapists, and your classmates. Perspective is an amazing thing. I would say that of all your friends, you are most…developed? Advanced? Aware? I’m not sure quite how to describe it.

I’ve always thought of you as so severe in your syndrome. There is no denying that’s true. But today I realized it could be much worse. From what I can tell, there is more personality in your face and more laughter in your eyes than the kiddos in your class. I am 100% aware that the other moms would probably say the exact same thing. Because they are moms and somehow anticipate their child's every need, preference and emotion without any words being exchanged. They know their child better than anyone else ever will and can see things a passerby would miss.

Still. I am glad you are mine.

Plan of Action

Today we saw Dr. G for his perspective and game plan on these Audrey episodes. I explained to him everything that happened this time around and how it differed from past times. As I talked I could see more and more confusion creeping over his face.


To sum up our conversation, your symptoms are very unusual. He doubts it is CVS because of the white count—that definitely indicates infection. But he agrees viral doesn’t sound right either. A flare up of your Hirschprung’s only makes sense if we see a distended belly during these episodes—which we don’t. More than anything he says the high fever each time is the red herring. The blood could have been from a number of things…no way of knowing without looking. But even though he seemed a bit put out that nobody made finding the source of blood a higher priority (join the club), he did concede that finding the source of infection should take precedence because of the fever and white count. And he added that poking around with a scope isn’t ideal in that situation. So our plan now?

We have scheduled an endoscopy and colonoscopy. Sorry Shnook, I know that’s not fun. But at least it is not another colostomy, which is what my mouth wants to say. This may be all for nothing…the digestive tract heals quickly. But if it’s too risky to look while you are sick, we have no choice but to do it while healthy and pray we find something. Or rule some things out.

I still haven’t abandoned the idea of CVS in the slightest. Maybe high fever isn’t typical (although online it says fever is a normal symptom—and when is “online” ever wrong??) but you make stuff up all the time Audrey. You aren’t even a typical SLOS case, and when I mentioned that to Dr. G, using your hydrocephalus as an example he smiled and agreed, “She has them all beat.”

Way to go Audrey. ;-)

Home Away From Home

Thursday morning started off with some excitement…and not the fun kind. I’m talking about the sick, exhausted, worried kind. At 1am we woke up with you throwing up. I figured it was just your normal throw up because your tummy was too full, so Daddy and I vented your tummy to remove some gas and found dark brown stomach contents. Knowing you had skipped nighttime meds, I couldn’t imagine why that would be. I had three ideas. Bile somehow gone awry, stool backed up (is that even possible? I felt like you had been moving towards constipation so this seemed most likely to me), or blood. Regardless, I didn’t feel good about putting it back in your tummy, so we poured it out and switched you to water—out of Pedialyte. Back to bed for a solid three hours until you woke up again at 4am.


This time you vomited dark brown mucus. It didn’t have a smell, so my new leaning was blood. That seemed even more likely when it dried reddish. Your temp was 102.6 under the arm, very high for us with an avg of 96.7. I didn’t know what was happening with your stomach and didn’t want to give you a fever reducer. After about 30 minutes of constantly vomiting blood we decided we had to go to the ER.

I would have loved for just one of us to take you and someone to stay with Liam. But with how much you were vomiting, we knew everyone had to go so that you could be suctioned along the way. We woke up poor brother, who was very sweet despite the hour, and packed ourselves up. 30 minutes later we were finally ready to go.

Miraculously we arrived at TCH West Campus without any throwing up along the way…but a lot of close calls. With only one other girl in the waiting room, we were seen within 5 minutes. Daddy filled out the paperwork while you laughed. Laughed! Audrey, I hate making these judgment calls on whether or not to take you to the ER because that is exactly what I am afraid of. That we will get there and you will feel better, and then they will never let us leave.

At this point we were committed, and it was still the blood that I was concerned about. Never before has that happened. So we were called back and your vitals were taken—new temp of 103.5. I changed your diaper for the weigh-in and found blood in your stool. It was the right decision to take you to the hospital. Too many factors were different than your usual Audrey episodes.

They took several vials of blood to test for numerous things. I won’t even go into that saga, but despite the digging around for your vein that it took, your bruising was minimal. Next was the IV…much better. Started you on fluids and Motrin through the IV. We saw the doctor and I explained my theory that this was always based on constipation. This always ends in a huge, toxic smelling BM and afterwards you feel 100% better. I asked for an abdominal x-ray to confirm or deny. They obliged.

After a bit of a wait the doctor came back with all the results. Not constipated. Ugh. That would have been so simple!! Now I have no idea what causes this. (Side note: this was the one time it didn’t end with a BM so Daddy made a good point in saying we aren’t sure that wasn’t the cause all the other times. Now we haven’t even ruled out the constipation!) White blood cell count was high...I think she said 43,000. Between that and the blood, we needed to go to TCH main campus. So an ambulance was called, Honey picked up brother, and we headed to our home away from home.

There I explained your symptoms, my theories, and we did more tests. CT and x-rays to make sure your shunt was fine (it was). The doc wanted to tap the shunt to check for meningitis and I said no. At that point your fever was down to 98.7. I told her meningitis doesn’t add up, because shouldn’t the fever be back by now? She attributed the lack of fever to the meds, but your one dose was 7 hours earlier. I held my ground. She brought in the attending for back-up. I held my ground again. They brought in the neuro-surgeon for back-up. He was on my side. He said tapping the shunt would create more problems and risk of infection than it was worth. Score one for Mama.

Except then the resident and attending came back and told me that neuro was fine with doing an LP (spinal tap). Of course he was. Daddy and I asked them to tell us exactly what they hoped to accomplish by doing an LP, and they explained that it could reveal other viruses that may be the problem. This is too cyclical for me to believe it is a virus you catch each month but I suggested a compromise. Since their concern was the white blood cell count, I asked to repeat the test to make sure the count didn’t come down with your fever. They agreed, and the blood draw was painless since the nurse just pulled back on your IV.

It was still high (38,000?) so we did the LP. Rather, they did the LP while Daddy helped and I went to get a drink from the food court. You had an LP while in the NICU and I left for that one also—I have never chosen to leave for any other procedure. Not sure what it is about the LP that makes me nervous. Maybe it is because I had a bad experience with an epidural once.

Anyway. It wasn’t until AFTER the LP was performed that we were told the results wouldn’t be available until 24 hours later. And you guessed it, no way can we leave until those come back. In the meantime, your fever was essentially gone, you felt fine (although maybe a little worn out from the poking and proding) and you had not vomited a single time since we left the house. Still some blood in stool and whelps popped up on your body (why not?) but overall, you were in good shape. Nevertheless, we were spending the night.

You were moved to a private room, and Daddy stayed with you, sleeping on the couch. I went home to sleep so that I could see Liam, bring back a change of clothes and other essentials for Daddy, and get a good night’s rest.

Ha! The good night’s rest didn’t happen, but that is a story for Liam’s blog.

The next morning I got back to you and Daddy as quickly as possible, and found my girl in great spirits. I climbed into the bed with you and the three of us just spent a quiet day together. The results came back on your LP—clean. I knew it! But at least now we have ruled out several things, and I can reference back to it next time they want to do another. GI came to talk about the bleed somewhere along your digestive tract. I highly doubt that this was from irritation to your esophagus due to vomiting. The blood was there from the get-go. It didn’t occur after several rounds of vomiting. And I have never seen blood despite 3 years of almost daily vomiting. I’m not saying it’s impossible…I know your esophagus can erode over time or suddenly have a tear. But I have a few other ideas to explore in clinic with GI. We have a GI appointment on Tuesday that I apparently scheduled 6 months ago and knew nothing about. Coincidence? I don’t think so. Bet we (I) decide a scope is in order sooner rather than later.

I asked every single doctor we came into contact with if they could think of something that would be so cyclical to cause these vomiting episodes every month or so. Nobody had any ideas…all anyone came up with was that you just happen to catch a virus on a routine basis. Except for the last GI doctor we met. At the wording of my question he gave a little laugh and said there happens to be something called…brace yourself for this one. Seriously, get ready. Cyclic Vomiting Syndrome (CVS). Are you kidding me? This man is the first to think of this? When I typed “cyclic” into my search engine to research it later, Google (I love Google) automatically filled in “vomiting syndrome”. I Google EVERYTHING I am slightly curious, why didn’t I Google this? It never lets me down.

Fever, vomiting, diarrhea, and usually accompanied by migraines (we wouldn’t know if you had one of course, but I wouldn’t be surprised). Each episode usually occurs at the same time of day (for you during the night), lasts the same length of time (yours are 12ish hours), and is about the same level of intensity (INTENSE). Triggers can be colds, hot weather, motion sickness, or emotional distress. Audrey. He felt like this was a long shot, and maybe it is. But it describes you perfectly. It looks like the main treatment is learning the triggers and preventing them, but there is also a med our doctor mentioned. I am all over that. I’m going to insist we try, because we need to figure out a way to prevent these Audrey episodes!

Unfortunately it is a difficult diagnosis with no definitive test. It is more a diagnosis of elimination with a pattern needing to be established with the doctor. Hence, this post. And all the posts to follow with detailed information about your sicknesses. Daddy has already created an Excel spreadsheet, and I love him for it. But Excel doesn’t get along with me as well as it does with Daddy. So this is my new “Audrey Episode” journal. I know you won’t mind the boring, medical, sometimes personal posts if it means avoiding your monthly illness.
Going to the hospital, I felt like if we could get some answers, everything would be worthwhile. 36 hours later I was convinced it had all been a huge waste of time (not to mention your comfort), but this last doctor walked in and gave me a glimmer of hope that some sort of resolution was in our future.

I’ll let you know how our Tuesday appointment goes. I love you Audrey Boo, and I am so glad we are all home together again!!

Waiting on a Miracle

A chorus from a children's song I haven't heard in 20 years has floated back into my head and camped out there all week.  It says:

"I anticipate,
the inevitable,
supernatural,
intervention of God. 
I expect a miracle.
I expect a miracle."

I have no idea how the rest of the song goes.  But Audrey, spread the word.  We are expecting a miracle.

Read all about it HERE.

The parents on the bus...

...did not say "I love you" this morning!!

Your ride to school did not go well today. About 10:30 I got a call from Mrs. P (your nurse) saying that you had a rough morning. Apparently I was wrong and there is one other student who gets picked up after you. I didn’t mention earlier that the bus was almost 30 minutes late picking you up—it was the first day and the kinks are still getting worked out with traffic and such. When the bus arrived to pick that student up, the parent gstarted yelling at the bus driver and attendant for being late. You have always been intuitive and sensitive to others emotions, and your feelings were hurt by this exchange. You started crying to the point of vomiting, and didn’t let up for most of the morning. Every once in a while you get so upset that nobody can console you. As soon as you seem like you are feeling better, your eyes will well up and that pouty lip will come out again. This was one of those times. Your teachers at school went easy on you, rocking and cuddling most of the morning. When you made it clear you didn’t want to get in the stander, they took you back out. When the call came in, you were pacified, side-lying on a boppy holding a stuffed animal. Tomorrow I will send a Lambie to stay at school.

Who DOES that? I mean, really? Thirty minutes makes an adult feel justified in getting on a special ed bus to pitch a fit? I am blown away. At first I was really sad thinking of you exposed to that angry parent without a single person you knew to comfort you. Mrs. P said she thought you probably weren’t used to that tone of voice and I laughed saying definitely not. You can’t see or understand words well enough in that situation to know who the anger is directed at—for all you knew that person was yelling at you. Right now I am just so aggravated with that parent. And I feel horrible for their child imagining what their home environment must be like. Tragic.

After school you were the only student on the route home (whew!). But because of issues with the bus lift strap, you left the school campus 40 minutes late. But it was repaired or a new bus came—I am not sure which—and in the meantime you waited inside with your teachers. That sort of thing doesn't bother you one bit, and I really do understand also. But goodness, this was not a good introduction to the bus for us!

I’m looking forward to talking with your morning bus driver tomorrow and getting more details on what the plan is to prevent this parent from coming within earshot of you again. I’ve got a plan of my own if they need any help brainstorming.

The Wheels on the Bus...

You had a terrific first day of school! Your teacher will send you home each day with a note listing your morning’s activities, mood, and level of participation. Your nurse will send you home with a communication journal telling me about things like diapers, when your feed ends, any concerns health or behavior. I am going to so look forward to these notes each afternoon.

It looks like you did more yesterday than we get done all week! You played with textured materials, vibrating objects, shiny objects, switch toys, books, painted, played with shaving cream, stood in a stander, practiced rolling, used tumble forms, the motion board and PT came. Whew, what a morning! You got all 5’s for participation in circle time (meaning you independently participated), and 2-4’s for participation during the structured teaching portion (meaning you needed verbal, gestural, and/or physical cues). Your teachers learned that you like shiny things, rocking motion, and are a happy, smiley girl!


The new thing for today, and the scariest part for me, is the school bus. Here you are all loaded up, watching out the window for your ride.


And when we got impatient, we went outside to wait. Mistake. It was already too hot and muggy for you at 7:30 in the morning. But you trooped through to take some pictures. I didn’t realize my lens was smudged until I downloaded them, so they are all a bit blurry. I will ask Grammy to take more pictures when she gets you off the bus this afternoon.




SUCH a big girl!! In this picture you aren't smiling, but you did think the sounds the bus lift made were pretty funny. You will do great on the bus. You are the only child, and an attendant is right next to you in case you need to be suctioned. And the timing is such that your tummy will never be full while riding--hopefully vomiting will be a non-issue.


Your brother was very uncertain again this morning. He understood you were going for a bye-bye, but couldn’t figure out why he wasn’t going with you. Here is an unprompted “I love you” sign. (He hasn’t figured out how to put down just his middle and ring finger, so it looks like “3”. But it really does mean he loves you.)


And here he is waving until your tail lights disappear. Come home soon Sissy!

First Day of School!

The day didn’t go exactly as planned, but when does it ever?



You woke up at 6am—a smidge earlier than necessary. I was hoping you could sleep till the last possible moment. With about 20 minutes to go before walking out the door, Liam woke up having thrown up in his bed. I have no idea why, he felt great. But a bath was definitely in order. And then despite leaving 15 minutes late, we arrived at the school 15 minutes early. There was no traffic and we made record time. That called for an impromptu stop at Starbucks.



Then we dropped you off. It was faster than I expected. We pulled into the special ed circle (which is great by the way—totally missed car line) and started unloading your things. Daddy met your teachers and I gave some last minute instructions. Once you were in your seat, we snapped a few photos. Thankfully you gave a pretty smile early on—I didn’t want to be the obnoxious parent who insists on taking picture after picture until we got it right. I didn’t want to be that parent, but I would have been if that’s what was needed.



We pulled brother out last minute to take a picture and give you a kiss. He got out excited, but when we told him to tell you goodbye, I could see the confusion on his face. His usual cheesy grin was hard to draw out, he just kept looking at you like he wasn’t sure what was happening. Eventually he gave you a kiss, but when Daddy put him back in the car seat, he really started throwing a fit. He kept crying, saying your name. In fact the whole way home he asked, “Where See-see?” Never before have we dropped you off somewhere and left without you. He knew your car seat should not be empty as we drove home.



I started typing in my post last night that Daddy and I might be emotional, but Liam would be fine. But then I deleted it because I figured that went without saying. Boy was I wrong. I think Liam’s distress distracted me from my own feelings. I didn’t feel sad until we pulled into the driveway and I only unloaded one baby from the car. And it wasn’t so much sad as it was just a little lonely. For three years it has always been you and me. Even now I find myself keeping an ear out for you to throw up or your machine to beep. Instead all I hear is a ruckus from your brother (I have a feeling I am about to find every book you two own scattered across his bedroom floor). He and I are going to stay busy until it is time to pick you up. We can’t wait to hear all about your first day at school!

School Daze

Tomorrow you start school. SCHOOL. I have had several moments of “Oh my, what have I done? This is crazy!” followed by moments of clarity when I know how wonderful school will be for you.

I didn’t run out to get the few things you needed until tonight at 8pm. I had forgotten it was tax free weekend. Rookie mistake if there ever was one. Maybe it was denial, or maybe I was just holding true to my procrastinator fashion. Regardless, in less than 11 hours my big three year old girl (who is the size of a little three month old girl) will be in her new classroom. Daddy, Liam and I will drop you off tomorrow, and then Liam and I will pick you up three hours later. Yep, just three hours. But it will be three hours of hard work.

Tonight we will all try to get some great rest, because tomorrow is a huge day for everyone. You will most likely come home more exhausted than you have ever been in your life and I may or may not be an emotional wreck. I’ll skip the mascara, just in case.

Wonderland Indeed

Today we finally went to Morgan’s Wonderland here in San Antonio. It exceeded expectations.


We arrived at 10:00 when the park opened and there was no line. They recommend you make reservations because they don’t allow the park to be overcrowded. Plus it is faster to fill out your essential medical needs online (they have a first aid station that can help with much more than a scraped knee). Before entering the park everyone in our group was given a wrist bracelet with a tracking device. There was one scary moment when I couldn’t find your brother and the volunteer asked if we wanted her to look for him. I thought she meant with her eyes, but she meant on one of the kiosks stationed throughout the park. We found him a second later (in the sensory car, his favorite thing) but it is so great that all you have to do is swipe your bracelet and it will locate everyone in your group on the park map. We didn’t need it then, but we tried it later just for fun. After checking in, we headed out to play. Straight ahead are two huge playscapes, 100% accessible for wheelchairs. The whole area is covered in UV protecting canvas tarps for shade. There are multiple sensory activities like rain sticks, sand hour glasses, marbles that make sounds you loved. We pushed you around the playscape with brother while he explored. There was a fun platform where we could sit and rock while you sat in your wheelchair between us. We did the playscapes for quite awhile until Liam discovered the carousel.


The carousel, like the rest of the park, was also completely accessible. We wheeled you up onto a platform where your chair was secured by straps. I sat on the bench with you and as the carousel went around, we rocked back and forth. You loved it! After we went once, we picked up a couple more riders and went for round two. By then you and I needed to find some AC for a break. On to Sensory Village.


Sensory Village is a building full of lights and sounds and textures. Inside are a stable, grocery store, auto shop, weather station and…well, I don’t know what to call the other room. The biggest hits for us were this mystery room and auto shop. The auto shop had half a built out car with buttons to start the ignition, radio, air. Projected on the windshield was a driving scene that shifted when you turned the steering wheel. Liam could have hung out there all day. There were tools that made the appropriate sound the second you touched them. And there was a computer screen to decorate your own car. We swiped your bracelet so it would know your name, and here is yours! When I checked my email later, I found all of our cars had been emailed to me.

The last room was very dim and each wall had a large screen with a projector. The first screen had blue tadpoles swimming around on it. But as somebody walked (or wheeled) up toward the screen, the tadpoles would swarm around that person. The second screen had colorful butterflies that would settle on your shadow if you stood fairly still. And the third was your favorite. It had falling rocks that made the sound you would expect gravel to make. We were able to “catch” the rocks and then drop them at once. Pretty cool technology. (These pictures don't begin to do it justice.)

After a snack (they encourage you brining in your own food/drinks but have a concession stand) we headed out to the train station. We could have loaded up your chair there, but decided to take you out and hold you for a break. We went around once and the conductor gave us an overview of the park—it was a good chance to see where we wanted to go next. Again, we just stayed on the train and went once more after arriving at the station.


Next we went to the Pirate’s Cove (another huge playscape) and then the Wharf. The Wharf is a dock out over the water where you can drive remote controlled pirate ships, shoot water cannons, and fish (we passed on that but apparently people catch HUGE catfish). The whole area is shaded and has mister fans hanging from the ceiling. At this point we were pretty exhausted and the park was about to close. We had one last stop we needed to make before heading to the car…



The swings! We should have done this first and just stayed there, because Audrey, you LOVED it. It took only a moment to secure your wheelchair and once we got started, you smiled and talked and chuckled the whole time. It was so much fun to watch you thoroughly enjoy yourself.




By this time it was 2:00 and the park was closing. I had no intention of staying that long—we didn’t stay 4 hours at Sea World yesterday! And there was a lot left undone. We didn’t drive the cars (naturally, wheelchair accessible), go to water works, check out the sand pits (with sidewalks throughout for chairs to access digging tools) or walk around the lake and check out the themed rest stops. But it is smart for them to close during the heat of the day…they wouldn’t get much business then, and the park relies heavily on a volunteer staff. I loved this experience. So clean and spacious, safe and friendly, affordable and fun. I think this will be the best part of our vacation, by far. And we would have never discovered it without you Audrey Boo!