Audrey's Path

New Goals for 2012

2012-01-13T13:49:00.000-06:00

Because you are a superstar, Mrs. C sent home new goals for you to master this semester. And they are...drumroll please...

*Explore a variety of objects by grasping and holding in each hand 3-5 seconds in 2/5 trials.

*On contrasting backgrounds Audrey will fixate and track objects horizontally to broaden her visual field in 2/5 trials.

*Audrey will develop more purposeful switch use patterns to answer questions, make a statement or make request within 15 seconds using up to 3 verbal and 3 physical prompts in 3/5 trials.

*In a variety of positions and in a variety of activities, Audrey will bring hands together midline to clap or manipulate objects with up to 3 verbal prompts and 3 physical prompts in 2/5 trials.

It's exciting for Daddy and I to imagine you doing these things, especially number three. Work hard so we can visit and watch you show off your new skills!

To my precious Audrey:

2012-01-05T11:06:00.001-06:00

Sweet, sweet Audrey. You are already a big sister, so you know what to expect. This time will be a bit different than with brother, although you have been on the other side of this as the new baby who needs to spend some time at the hospital getting healthy.

Throughout this entire pregnancy, you have given me so much hope and strength. When I've mourned for the baby that could have been, I think of the enormous blessing you are to our family. When I get overwhelmed thinking of the journey ahead of us, I look back on how far you've come, and how much fun we've had along the way.

You are so special. I'm sure even I don't realize the full impact you have made on more than just your little world. Anybody who meets you or hears your story loves you. Everything about your life is miraculous. Just the other day I was reminded yet again how amazing it is that you are so happy and healthy at 3.5 years old. A mom wrote into the SLOS group to tell us about her son who died a year ago. He was three months old, on the severe end of the spectrum. She listed the complications he had--the list was long. But there wasn't any item on it you haven't dealt with, and you could have added several more. I cried as I read that email; for that mom who lost her firstborn and for myself because it could have been me.

My prayer, even hours before her birth, is for Abbey to be healthy. But if God has different plans, part of me is excited to bring home a sister so similar to you. The two of you will no doubt have a very special relationship.

Thanks for making me a mom. You were so unexpected, but also so welcomed. I couldn't imagine our family any different than what it is. Sit tight and I'll bring you that new sister as quick as I can.

I love you my shnookity!

School Girl

2012-01-03T16:47:00.001-06:00

You must know school is starting up again tomorrow, because today you woke up back to your normal self. Your feeling good, tolerating full feeds, happy little self. I'm so relieved.

I'm hoping you have a good first day back. Because you haven't felt well, we have taken it very easy around here. You've been in your chair rarely, and in your stander rarer still. I've got a feeling you are going to come home exhausted tomorrow!

Sick Shnook

2011-12-28T15:24:00.000-06:00

My little shnook has been sick the lastcouple of days. The usual fever and diarrhea…yuck. We had planned on taking our family toGalveston for a few days to see the Festival of Lights (which I think you wouldlove) and a few other attractions, but because of your sickness we have changedplans. If you remember, the exact samething happened this time last year! Wewill try again in 2012.

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

December Miracle

2011-12-22T15:14:00.000-06:00

You won’t believe it. Last night you and Liam both slept throughthe night without waking to be sick or go to the bathroom. So Daddy and I got a second uninterruptednight’s sleep! A girl could get used to this, though I won't get my hopes up. Idon’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

2011-12-21T15:05:00.000-06:00

Last night we had a late Christmas party,and this morning an early OB appointment, so you and brother spent the night atGrammy’s house! That’s a specialtreat. You cuddled with Papaw while Liamand Grammy went on a long walk. Itsounds 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 anuninterrupted 8 hours was heavenly. I slept so hard that I didn't dream, I didn't MOVE--I wouldn’t have thought it physicallypossible, but I didn’t even wake up during the night to go to the bathroom. (That almost backfired the moment I awoketo the alarm clock.) Neither of us can rememberever feeling so rested. I told Daddythat if we could get a solid night’s sleep like that a few times a year, wecould 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 sleepwill do for a body! Thanks Grammy for this unexpected gift!

School's out!

2011-12-16T14:14:00.000-06:00

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

2011-12-13T12:08:00.000-06:00

Have I ever told youhow 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.

2011-12-10T14:43:00.000-06:00

Bub likes to help entertain you while you stand.

You like it too.

Be An Angel

2011-12-08T12:37:00.000-06:00

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

2011-12-06T13:55:00.001-06:00

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

2011-11-27T14:34:00.000-06:00

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!

2011-11-22T19:47:00.000-06:00

You are so cute!

Today you arrived home off the bus in thisThanksgiving hat (I guess technically headdress) and officially kicked off yourvacation from school. First on theagenda…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 hourwait just to see the nurse, she tried telling me we couldn’t have the shotsince you were allergic to eggs. Soaround and around with her I went. Youhave gotten the flu shot every year since you were born and never had aproblem. Your allergy isn’t severe…Bubis much more allergic than you and he did just fine with the shot. And now they are saying it is such traceamounts of egg, it won’t affect those with allergies anyway. On top of all that, I would rather deal withhives or minor vomiting from the shot than the actual flu. I had the flu last year and felt like I wason death’s doorstep. I can’t imagine howyou would manage. So she went and gotDr. L who said you could have the shot, but asked that I stay 30 minutes forobservation. 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 canbegin!

I’m looking forward to having you home for a fewextra days this week. Tomorrow we canleisurely wake up without rushing to get you on the bus by 7:30. Of course, I’m betting you are awake at yourusual 5:00. It’ll be nice to stay in ourjammies awhile regardless.

It's the little things...

2011-11-17T12:58:00.000-06:00

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

Haiku for Aunt Paula

2011-11-14T16:55:00.000-06:00

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

Thanks.

Girl's Morning In

2011-11-12T11:02:00.000-06:00

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

2011-11-09T15:41:00.002-06:00

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

2011-11-08T13:28:00.000-06:00

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

2011-11-05T09:10:00.000-05:00

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

Daddy and I went to the hospital the nightof June 8^th-- --a week after your due date--to start the induction process. We were supposed to arrive at 7:00, but gotthere closer to 11:00. The entire time Iwas pregnant with you I didn’t expect you to come on your own, so I neverpacked a hospital bag and was scrambling at the last minute.

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

Contractions woke me up at 4:00am and Imight have gotten small snippets of sleep until about 8:00 when Daddy wokeup. By 9:00 my contractions were gettingintense and started asking for the epidural. My bloodwork showed that my platelets were low, so I was told I had towait about an hour and recheck them before I could get my epidural. I have noidea at what time I was which centimeter (ok, so maybe the memories aren’tfresh as can be), but I felt like I was progressing fairly quickly. My contractions were two minutes apart andlasted about a minute. An hour later myplatelets were still borderline. By11:00 Dr. S came to check on us and was appalled I didn’t have an epiduralyet. She said that if I was borderlinethen that was all the more reason to get it as fast as possible, before theydropped too low. The anesthesiologistarrived immediately after.

From then on I was sitting pretty. Dr. S broke my water and we all just sataround visiting until it was time to push. In the room was Grammy, Honey, Mema, Shelby, Grammi and of courseDaddy. 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 tolose consciousness for the minute between each contraction. As the contraction started up, I would wakeup 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 andthe sounds in the room dimmed to nothingness. A minute later I would wake up asthe contraction intensified.

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

About 5:00 Dr. S came to see why we weren’tprogressing. She asked the nurse howlong I had been pushing, and the nurse said 2 and a half hours. Dr. S was not ok with that and said we neededto get you out immediately. But our familywho nearly required stadium seating knew better—it had been three and a halfhours. (Let me digress here to say ournurse really was fabulous. Super sweet,didn’t mind the crowd in the room, very gentle and caring. She was a travelingnurse, just coming back from a stint in St. Lucia where Daddy and I gotmarried!) Dr. S called for the foreceps. I said “No, please, just tell me whatto 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 Iwas supporting her weight. At leastthat’s how it appeared from my bed; really, she was supported by her leg behindher. But since I thought letting go woulddrop the doctor on her rear, I held on for dear life. Several pushes with this method later, youwere 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 thatterrible. I figured epidurals barely took the edge off and that it was normalto push for hours upon hours. It wasn’tuntil later that I found out that you were sunny side up and a brow baby. Meaning the widest part of your head camefirst instead of the narrowest. This wasa rough (and true to Audrey fashion, rare) way to deliver for you and me both—almostalways done by c-section. When you leftthe NICU at 9 weeks old, you still had the scabs from scraping your face on mypelvic bone the entire way down, and I was still recovering in my own waysalso. Sixteen months later I found outhow a “normal” delivery goes. What abreeze! After 20 minutes of pushing and almost no pain, your 9 lb, 4 oz brothermade his entrance into the world. Icould do that every day!

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

They brought you in for me to hold for a quickminute 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 mylife. I wasn’t allowed to get out of beduntil 6 hours postpartum, but at 11:30 was shift change. So Daddy took me upstairs to see you for thefirst time around midnight. He rolled meup in the wheelchair to a bed warmer, and I stood up, walking tenderly andlovingly towards it. Then I heardDaddy: “Uhh baby? That’s not ours. She’sover here.” Oops. (But seriously. Heparked me in front of the wrong bed! I let it slide knowing he was as tired andheartbroken as I was.) I held your hand and cried—I don’t know how long. But I do remember wailing into Daddy’s chestat 3:30 in the morning while he squeezed into my bed with me. At some point sleepmust have relieved me from my exhaustion and shredded emotions.

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

People always tell me how strong weare. That they wouldn’t have thestrength to go through something like this. Sweet sentiment, but absolutely ridiculous. If someone was to have asked me the daybefore 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 thetime…that way we have to turn to Him to handle it for us. So on the day youwere born He held my heart to keep it from shattering, strengthened me so Icould keep moving forward, gave me the ability to understand the informationthe doctors found, and created in me the organizational skills to keep up withall your paperwork. God really is good,ALL the time.

First Fest

2011-11-01T17:18:00.000-05:00

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...

2011-10-31T16:21:00.001-05:00

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!

2011-10-31T14:46:00.000-05:00

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

2011-10-28T19:07:00.000-05:00

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!

2011-10-27T16:25:00.000-05:00

Prepping for Friday

2011-10-26T21:09:00.000-05:00

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

2011-10-23T16:38:00.000-05:00

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

2011-10-21T21:23:00.000-05:00

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

2011-10-19T10:12:00.000-05:00

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!

2011-10-18T21:28:00.000-05:00

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!

2011-10-13T15:47:00.000-05:00

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

2011-10-12T15:17:00.000-05:00

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

2011-10-11T08:40:00.001-05:00

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

2011-10-06T17:36:00.002-05:00

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...

2011-10-04T21:40:00.003-05:00

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

2011-10-01T19:57:00.000-05:00

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

2011-09-28T13:00:00.000-05:00

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!

2011-09-20T08:42:00.000-05:00

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!

Plan of Action

2011-09-13T20:07:00.000-05:00

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

2011-09-10T08:36:00.000-05:00

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

2011-09-01T16:32:00.000-05:00

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...

2011-08-23T21:51:00.003-05:00

...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...

2011-08-23T08:58:00.008-05:00

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!

2011-08-22T09:59:00.006-05:00

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

2011-08-21T21:51:00.000-05:00

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

2011-08-16T20:16:00.000-05:00

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!

Soul Patch

2011-08-08T08:42:00.000-05:00

You are good for my soul. When I am sad that your little sister has SLOS, I look at you and know she will be beautiful and wonderful.

Playing Catch-Up

2011-08-05T21:31:00.000-05:00

Audrey Boo. Your blog is so neglected. I have many posts partially written—just enough so that I remember dates and what happened. But I haven’t made the time to flesh them out just yet. I love you and will write to you VERY soon.

Summer Lovin'

2011-08-03T15:00:00.001-05:00

This week we have done nothing at all, and it feels great. I love mornings when we can wake up, leisurely get breakfast going, stay in our PJ’s half the day. Usually our days are filled with doctor or therapy appointments, outings or to-do’s. But this month of August we have almost no plans. I am so glad we decided to take some time off therapy, and just work by ourselves at home. Soon school will start and we will need to kick it into high gear. But let’s not think of that while there is still summer to be had...

Drive By

2011-06-25T15:03:00.001-05:00

Today we went out as a family to get several errands done. We had lunch off of Fry Road, and I navigated Daddy on a surprise detour. We turned down Kingsland, went through another light and...

Me: Ta-daaaa!
Daddy: Uhhh, ta-da what?
Me: Audrey's school!!

I can't believe I am sending you to school next year.

Sleepin' In

2011-06-18T10:44:00.001-05:00

This week has been a fun, but busy week with VBS at our church. You had a good time with the sweet grandma’s who took care of all the babies. Grandma’s who just want to sit and cuddle are some of your favorite people!

Everyone was so worn out fromt the week that we all slept in until 8:30 this morning. Happy Father's Day to Daddy!

Our First ARD

2011-06-14T10:45:00.001-05:00

I want to tell you about our great ARD meeting at your new school last Wednesday! We met the principle, the teacher of your class, and the nurse in your class. Once again, eight ladies sat around one large conference table to discuss your little self. We read the report from your eval which essentially said you were eligible to be in the TIP program. We decided how often you would receive PT and OT in the classroom. The nurse asked great questions about your needs and our methods of doing things that showed me she is knowledgeable and experienced. The nurse and teacher both clearly have a heart for kids like you. Your mornings (class is from 8:20 to 11:20) will be full of activities to help you grow and develop, but at the same time they will respect your cues on days you just need to rest. Everyone appears to be thrilled to have you next year!

It is hard to imagine putting you on a school bus and sending you off each morning in just about two months. I never thought school would be a possibility for you. And it wouldn’t be, if it weren’t for this program. So while I am a little anxious and a little sad (just because I will miss you—you have been my constant companion for 3 years), I am also very excited. I think you will get so much out of it and that is exactly what Daddy and I want for you—to grow and learn. I am praying it will be a great experience for all. And in the meantime, we will enjoy our summer!

Some Birdie is Turning Three!

2011-06-11T20:39:00.001-05:00

Today was your birthday party! We held it at First Baptist at the Rec Center. They have two huge playscapes, bowling, pool, foos ball, air hockey, and a room for our snacks. Almost all your friends were able to come, and we really had a great time. It was very low maintenance for me…no games or activities. We just sang happy birthday and let everyone play!

I chose a theme to match your bedding…birdies in pink, brown and lilac colors. It turned out way cute (if I do say so myself). And the best part was that I spent $4 on tablecloths and that is absolutely all for décor. I had leftover plates/napkins/utensils from your first birthday party and everything else I brought from your room. I wish I had a picture. But with only 30 minutes set up time, I finished the moment everyone walked in, and never looked back. Which was good—I wasn’t stressed one bit and was able to enjoy the party.

I’ll describe the set up so that I don’t forget. On a lilac tablecloth I had the pink wooden flower pots of various sizes from your bedroom. Those held plates, napkins, and utensils. I had a three tiered plate stand that held your pink strawberry and chocolate cupcakes with the birdie toppers. In the middle were three apothecary jars that each held a “Sweet Tweet”: chocolates in lilac wrappers, pink Starbursts, and chocolate covered mini donuts. I had “Chickadee” shaped cheddar crackers in a white bowl, and on the other side of the table “Cheep-Cheeps and Dip” (creamy jalapeno and salsa from Chuy’s). We kept drinks super simple with bottled waters, Capri suns and cans of coke. Two bird figurines on sticks (that sounds strange, but really, they are cute) and your framed invitation rounded out the decor.

There was a table for gifts and a table for party favors. All the kids received a bag of gummy worms with a sticker that said, “The early bird gets the (gummy) worm!” and a bag of birdseed that said, “For the Birdies at your house.” Daddy helped me assemble these. Boys got a bird whistler that warbles when water is added to the bottom, and girls were given a bath fizzie with birds on it. For the babies I attempted to make these cute bird softies I found HERE, but it would have gone much better if I began my endeavor sometime before Party Eve. Live and learn. (Who am I kidding? I doubt I will ever learn. I wait till last minute for everything. It’s in my DNA.) With a lot of help from Mema and Sam, they came out decent. But I have plenty of leftover fabric. I am going to give it another go, even though crafty is most definitely NOT in my DNA. All the gifts went in paper bags that Daddy drew impromptu birds on.

We did get this one family photo and considering Liam was fighting to play rather than pose, it turned out pretty good! That’s all I’ve got in the way of photos. Sorry chica. But we have memories.

**If anyone else has pics from the party, please send them my way!**

**Invites by Chelsea Davis. Super sweet gal who did an amazing, quick and affordable job! My picture is horrible but the invites are precious!**

Birthday Girl!

2011-06-09T16:56:00.006-05:00

Audrey Lee is turning three! (That’s our birthday mantra.)

Oh Audrey. Where has the time gone? Three is so big. SO BIG. Officially not a baby, no matter how deceiving looks can be.

Our plan was to take you to an amazing amusement park in San Antonio designed specifically for special needs children and adults. (You can check out Morgan’s Wonderland here.) I thought it was a brilliant idea to take you there on your actual birthday. We rarely do outings..I should clarify…we rarely do FUN outings just for you. Usually it is something Liam will enjoy and so you tag along. And to be blunt, there isn’t a lot you like to do. You are most content sitting at home being loved on by someone. But this is place was built with your comfort and entertainment in mind. And then we were going to take Liam to Sea World on Friday, making a mini-vacation out of it.

Best laid plans. Sigh. We were sick all last week and still completely drained. Daddy and I could have powered through the exhaustion. But the forecast called for triple digit temps in SA today. Much of Morgan’s Wonderland is outside, and although the playgrounds have UV canvas shades, you would have been miserable. I kept trying to convince myself that if we went early and took enough breaks and packed hand fans and cool packs, you would be comfortable. But I knew deep down every minute would have been spent with you in tears and us in metaphorical tears that you weren’t happy. And even though I surely would have gained “cool mom” points to take you somewhere so perfect on your birthday, it really is about you. Not my great idea and mom ego. So back to the drawing board.

Eventually we decided to go with the Children’s Museum. It is inside, cool, and there are plenty of lights, sounds, buttons and textures to hold your interest. It worked out wonderfully. You and Liam had a blast and Daddy and I had enough energy to enjoy it also. We became members so that we can go back throughout the hottest days of summer. Happy birthday Audrey! I am loving the big girl you are growing (albeit slowly) into and can’t wait to see what God has in store for the next year of your precious life!

Mrs. Liza

2011-06-08T15:53:00.002-05:00

It is bittersweet graduating out of ECI. Sweet in that it means you have made it to three! Bitter in that we are going to miss our weekly visits with our ECI family.

Today we said goodbye to Mrs. Liza, your ECI physical therapist. Liza was a crucial player the last 6 months or so in getting your orthotics, seating system and stander adjusted ideally for you. In the game of your equipment needs, she was definitely the quarterback. Without her connections and insistence on perfection for your equipment, we would have had a much more difficult battle in this area. We enjoyed having her be a part of our lives and are grateful for her help on this journey. We love you Mrs. Liza! Keep in touch!

Too Cool for (regular) School

2011-06-03T15:28:00.000-05:00

Yesterday was your Katy ISD eval to see where you are best suited to attend SCHOOL next year.

SCHOOL. Does that freak you out a bit like it does me? Surely not.

Several months back I attended the orientation class for PPCD. At that time I decided that although it is probably a fabulous program, it wasn’t a good fit for you. For one, they don’t group children by ability’s or developmental age. They just stick the first ten in a class and when it is full, start another. I imagined you in a class full of children with simple delays such a speech problems, and you getting lost in the hustle and bustle. Plus they do things like centers and circle time. Which is great for most kids. But your vision won’t allow you to see the board or the pictures in a book that is being read to the class. And even if you could, I don’t care if you ever learn seasons or numbers or letters. I want you to be able to sit on your own. Push buttons on toys. Those sorts of things. Most importantly I was concerned about your safety. In a room of 10 children with special needs, I would never expect the two teachers to constantly keep their eyes on you. However, with your vomiting, that would need to be the case in order to prevent choking and aspiration. For these reasons I declined to pursue public education for you.

Mrs. MB, your VI teacher, later told me about the TIP program. It sounded so perfect for you. I think she said this year they had 3 teachers and 4 kids, so almost one-on-one. And one of those teachers is a nurse, trained in g-tubes, Epi-pens, suctioning—the works! It is only for medically fragile children with vision problems. But we needed to go through KISD and PPCD to be placed in the exclusive class.

Which brings us back to your eval yesterday. We went to the building right by Rhodes Stadium where the PPCD office is located. There were probably a total of 7 ladies there, a mix of therapists, teachers and coordinators. All of us crowded around tiny you. They played with you on a mat to see what your tricks and how you reacted in certain situations. They asked me questions about your social, gross motor, fine motor, self help, and eating skills. And they allowed me to ask questions about the program as well. Knowing I had reservations about PPCD, they asked me to explain those. I stressed my concern for your safety in a large classroom. They understood my apprehension, but assured me that they have many kids in the program with similar issues. They felt that a regular PPCD class was where you should start off and if necessary we could later move you to the TIP program. These ladies were very sweet, approachable and reasonable. I could have pushed my case. But I just felt like I should hold my tongue. We said our goodbyes and headed to the car.

I called Daddy on our way home, and he asked me how it went. I told him that I was disappointed, because I didn’t feel like I did a good job expressing and insisting on what I felt was best for you. Daddy and I are really the only voice you have, and if we don’t speak up, who will? As he and I talked, I tried to figure out why I didn’t push for TIP. Maybe it was because I knew I would have time to fight that decision later. Plus, I now reasoned, it would probably be best to wait until Mrs. MB was present so that she could back me up and fight on my side. (She was at her daughter’s HS graduation, that’s why she wasn’t there for the meeting.) Even though these all sounded like great rationale, I couldn’t convince myself I handled things well. I was bummed. Daddy and I resolved to pray that doors would open and shut so that God’s will for you would be clear.

Today I got a phone call from a lady who was present for the eval. She said that after we left, they had some more discussion and decided the TIP program would in fact, be more appropriate for you. I was thrilled! Whether my silence at the meeting was at the Holy Spirit’s prompting or if God just worked it out in spite of my failure, I have no idea. But regardless, we have an ARD meeting set up for next week at your future school!

Dr. Dentist

2011-06-01T14:42:00.001-05:00

Today you went to the dentist. Last time we saw him, Dr. C really upset me with the way he handled you. I warned him that you were very orally aversive and to go gently. He promptly stuck his fingers way back in your mouth, causing you to immediately vomit. As I suctioned you, he took his gloves off, told me your mouth looked normal for a g-tube fed baby, and tried to walk out the door. I stuck my head down the hall and told him that after waiting two hours and then disregarding my child’s well being, he could at least give me two minutes to answer some questions. Ok, I didn’t say that. If only I could be so confrontational and honest. But I did tell him I had some questions, which he hastily answered in the hallway.

I spent two years looking for a new dentist. But what it comes down to is this: he is the only dentist at TCH, and from what I have heard, amazing at what he does. Dr. L won’t sign off on you to have dental surgery anywhere other than a hospital, and it is just simplest to keep all your medical history at one place. So we gave Dr. C one more chance. I don’t need a good bedside manner. But I do need him to respect your boundaries.

This time we waited under 10 minutes—off to a good start. I gave him a summary of what happened last time, and told him that your aversion has decreased in the past two years. I knew if he went s-l-o-w-l-y, you would allow him in to see what he needed. He went slow-ish. But to his credit, he sees what he needs quickly so that you didn’t have to tolerate much. You had “gag” face near the end, but didn’t get sick at all. He explained what he saw thoroughly and allowed me to ask questions. Much better experience. Maybe he saw that I came ready to fight if necessary.

And the results? Pretty decent. You have a complete over bite. None of your teeth match up whatsoever (which shows what a clever girl you are since you somehow you to manage to grind those back teeth when distressed). Several teeth have only come partially down, which is common for kids who don’t use their teeth for chewing. And they are odd sizes, shapes, and colors, but we have known all this since they came in. Basically, everything is fine, come back in a year, no dental work necessary at this time.

That’s a great reason to flash those pearly whites (or yellowish whites in your case…just keeping it real).

Baby Bowers Three

2011-05-30T21:48:00.002-05:00

You are such a great big sister. How about another sibling?

http://newestbabybowers.wordpress.com/

Mrs. Tamara

2011-05-26T15:51:00.000-05:00

We were disappointed to find out that today was our last OT session with Mrs. Tamara at ECI. We have changed VI, PT and case coordinators several times, but Tamara has been with us from almost the beginning. When the program was rezoning therapists, Mrs. Tamara refused to give you up and traveled outside her territory in order to see you each week. Lately you have been fussing during OT because she makes you work hard, but I’m glad she pushes you. At the same time, she always respects your limits and feelings. And you don’t hold it against her--you love Mrs. Tamara! You are always glad to hear her voice the next week. Mrs. Tamara has had many great ideas over the last two and a half years for new ways to position and engage you. She thinks outside the box and notices things about you that I sometimes overlook. As Mrs. Tamara left we all held back tears—after two and a half years visiting our home, she has become very dear to our family. Sad as we are to see her go, I am certain we will keep in touch. We love you Mrs. Tamara!

Cuddle Bugs

2011-05-23T20:48:00.005-05:00

You and your brother have been so cute together lately. Today I tried to convince Liam to be still and watch a video for a bit. You and I curled up on the bed and I trapped him in the pack n’ play. That didn’t last long before he kept asking to be put “down, down”. So I released the beast and he ran around my room for several minutes. Eventually he came back to us and asked to be put “up, up”. So I hoisted him on the bed, and he cuddled up right next to you. This suited you perfectly. You always love being close to Liam, but he almost always is a whirlwind of activity. We are never surprised when playtime ends with you crying, either from being startled or a minor hurt. But since he was in rare form this afternoon, you were able to reach out to touch his face. He was in the TV trance for a while, but when he eventually looked over to see who was petting him, his face lit up and he said, “Sissy!” He may be rough sometimes, but Liam really does love you.

Sittin' Pretty!

2011-05-21T20:58:00.000-05:00

We are trying out a new headrest for your chair. It cradles your neck more allowing you to sit straighter while doing more of the work yourself. We need a few adjustments already, but so far you like it!

And look at your ponytail! I never put your hair up like this because you usually have your head flat against something (floor, headrest, carseat) and it immediately gets messy. I jumped at the chance to do a ponytail today and thought you were super cute!

Party Planners

2011-05-19T15:07:00.001-05:00

You and I have been working hard this week planning your birthday party. It’s going to be super cute and fun…I can’t wait!

Daddy and I are also planning a surprise trip somewhere special. We did an absolutely crummy job celebrating your birthday last year. We didn’t even have a small family party. So this time we are making up for it. Every year we have with you is a miracle. We need to party and praise God!

Happy Girl!

2011-05-16T15:00:00.000-05:00

You have been so happy lately. No vomiting, lots of talking, reaching and laughing. When you feel good, it makes us all feel good!

And all this with your SPIO on…so clearly that wasn’t the problem last week.

Get glad in the same suit you got sad.

2011-05-13T11:42:00.001-05:00

Well I thought you loved your SPIO suit. But the last two mornings you have been in a terribly sad state. It seems like you are hurting but I can’t figure out what it could be the cause. Yesterday OT was over, and we thought maybe you just didn’t want to work (you did the same thing last Thursday). After Mrs. T left you didn’t immediately calm down. Holding you didn’t help, swinging you didn’t help, nothing helped. Since you were going to cry loudly no matter what I did, I took off your SPIO suit and put you to bed. You cried another 10 minutes or so and fell asleep.

Today it was same story, second verse. Only this time, no OT beforehand. I eventually took off the suit and laid you down. Surely the compression suit isn’t the problem. You love being squeezed! Maybe you aren’t sleeping well at night and are just exhausted. If it happens again tomorrow I will try putting you down with the suit and see what happens.

We need to get you some communication Girlie!

New Gear

2011-05-11T12:18:00.004-05:00

This is your SPIO. It is a compression suit that is supposed to help with body awareness and give you a little support as a very soft back brace. It goes on first thing in the morning under your clothes. You love it and I think it is super cute. To me it looks like a swim Speedo or a gymnastics leotard. Since we have had it, you have been talking more and sitting much straighter in your chair and carseat.

This is your Hensinger collar. We do NOT love this. I think it looks like you are participating in a muster drill. It restricts your movement and is called a collar. How tacky. It is supposed to keep your head forward when sitting. Good in theory, but I think it is too small. I will see if we can go back once again and get a larger one. We are at that orthotics place every couple weeks!

Renal Results

2011-05-09T11:44:00.000-05:00

The ultrasound was abnormal—you still have small kidneys. They are growing, but it sounds like not quite enough to keep up long term. One kidney (left?) was 3.7 cm at birth and is now 5.1 cm. The other (right? I can’t remember) was 3.9cm and is now 4.9cm.

The good news is that your labs came back normal, meaning you have plenty of function for now.

So fiddle-dee-dee. We will think about that next year--at your follow-up.

First...ehhh...Third Mother's Day

2011-05-06T14:40:00.000-05:00

Today you and I ran into the grocery store for a couple quick things. As we left a lady said to me, “Awww, a fresh new baby, just in time for Mother’s Day. Congrats Mom!”

I said, “Uhhhh, this is my THIRD Mother’s Day with her. Fourth if you count when I was 37 weeks pregnant with her. But thanks for that.”

Haha, just kidding. I would NEVER say that! The infant carseat is very misleading. I just said, “She’s my sweet girl, thank you!”

But you and I did laugh to ourselves.

Mother's Day Gift

2011-05-03T11:55:00.002-05:00

You had vision therapy today and you did some more artwork. She likes art for you because it is so tactile. With Mother’s Day coming up, you made me a pretty picture frame for the fridge.

It actually was very sweet watching you “make” it. Mrs. Mary Beth directed your hand into a bag of pom-poms, die cuts, buttons and such. She told you to pick out something pretty to go onto the frame and you did just that. Once you felt your hand touching something, you closed it into a fist and pulled it out. You selected a few pom-poms, a couple hearts, a moon and a dinosaur looking guy. I put it right up on the fridge around a picture of you from our New Year’s card, 2008!

That photo has been on our fridge ever since it was taken at 6 months old. At that time, I had lost patience over waiting to see you smile. Since your ptosis had not been operated on and you had not received your contacts yet, you truly had no concept of what a smile should look like, or what context we use them in. I decided you were going to learn. So I would just tell you, “Smile Audrey” while holding the corners of your mouth up. It took you less than two days to before you understood what I wanted you to do when I said “smile!” You didn’t know why, but you knew it made me happy.

It wasn’t always an immediate response. Often I would ask you to smile and then have to wait minutes for your ears to hear, send the message to your brain, your brain to process, send the message to your mouth and your mouth to respond. Daddy would give up and turn away—I would grab his arm and not let him move because I knew it was coming. And it always did. It didn't take long for you to realize the appropriate times to use that smile, and you were able to show us that you are such a genuinely happy girl.

You are such a smart chickadee, trapped in a body that doesn’t let you show it. I shouldn’t say trapped. That sounds so melodramatic and not at all how I mean it. We just need to figure out how to make that cute little body of yours cooperate a bit!

Anyway, thanks for my Mother’s Day gift! I loved it and I loved watching you create it. Oh, and I love you.

Wake-Up Call

2011-04-30T10:51:00.003-05:00

Daddy and I love spending time with you and your brother. Besides each other, you two are our favorite people. Still, we would rather not spend as much time with you on Saturday mornings and sleep in a bit. And by sleeping in I mean…7:30. 8:00.

We never know what to expect with you and Liam on these mornings. Generally, you both are excellent sleepers. Sometimes you will sleep absurdly late…say 9:00 or 9:30. Other mornings you are up long before the sun. I have never allowed anyone to get out of bed until 7:00 or later, and you both have learned to be content talking to yourselves until I come for you. (Recently we have discovered the merit of Saturday morning cartoons. We lock Liam up in a pack n’ play in front of a video. Barney has never sounded as sweet as he does in that 7:00 to 8:00 time slot.)

This morning we started hearing y’all jabber about 7:30. Not too early at all. But, true to our Saturday sleep-in policy, we ignored you both as long as possible. Liam kept banging on the wall that separates your rooms, calling “Mommy! Daddy! Be-Bo!” (really just anyone he thought might rescue him). At one point he got particularly passionate and yelled, “Maaaaa!” Immediately after this not so subtle demand, I heard you repeat “Maaaaa!”over the monitor. You copied his tone exactly, but it was definitely your voice. I excitedly punched Daddy to wake him up from his half state of sleeping wondering if he heard you also. He said he did and that he couldn’t tell the difference between your voices. As he rolled over and instantly fell back asleep, I realized he probably wasn’t conscious. But Audrey, I was and I heard you loud and clear. That was a sure way to get me out of bed; Ma is coming to get you!

PS - We got more of your cholesterol meds today. I will have to fight the payment battle another time, but at least you won't miss a dose.

PPS - We took Daddy's car to get an oil change and ran errands in it while out. Your legs got sunburned. Should have kept the window sun shade. :-/

And the saga continues…

2011-04-29T22:15:00.000-05:00

After the whole ordeal with Walgreens, I took out your cholesterol to pull meds for the next few days and discovered that we will be out of cholesterol by Saturday. A half month early. So now I have to get Walgreens to provide enough for the rest of the month, since it is too early to reorder for insurance and three days isn’t enough time to find a new pharm. (And even if it was, they need to dispense the prescribed amount of medication!)

Kidney Check

2011-04-28T22:11:00.002-05:00

Today you and I went to TCH for a couple quick appointments. First we did some blood work. Last week was the first time we saw renal in almost 18 months. Time got away from us on that one. The blood taken today is to check kidney function. I am expecting good results. And I just have to tell you that you are amazing. Not a single fuss for any part of the IV blood draw. In fact, you laughed most of the way through it. TROOPER.

Next we ran upstairs for a quick kidney ultrasound. When you were born and we ran every imaginable test (twice), it was discovered that your kidneys were small—about 80% of the expected size. We knew then that the growth of your kidneys would need to be monitored. If your kidneys grew along with you, no big deal. People can survive on a surprisingly low amount of kidney function, and 80% in two kidneys is plenty. But if they stay small, we will have a problem. We thought the initial follow-up ultrasound would take place around 1 year old…you are almost three and still have barely doubled your birth weight. At this point so much time has passed that we need to go ahead and check. Kids are TAKS testing today so the hospital was pretty much empty. We got in before our scheduled time, took some measurements and were out the door. I should hear the results back from renal shortly.

Resurrection Sunday Treats

2011-04-25T20:05:00.005-05:00

We've got a "His/Hers" thing going on here. Boys on the left, girls on the right. The baskets are for Daddy and me, the pool o' fun is for you guys.

Checking out the pinwheel...I think you like it!

Snuggle time.

It is becoming increasingly difficult for me to shop for you. I want to buy you things that you can enjoy, but truthfully there isn’t a ton you can appreciate. I wandered the stores quite a while before finding enough to fill up your "Passover Pool" (for explanation of pool instead of basket, see link to Liam's blog that I will later put HERE). I settled on a huge pinwheel, which I am pretty pleased with. The red and white are good for vision and you like the sound it makes. I also bought an Infantino toy steering wheel. I like that brand for you because the activation buttons are usually very sensitive and you can operate them yourself (or with only a little help). You thought the toy made funny sounds also, so another hit. I bought an inflatable pool float with a sun shade that I think you will be able to lie in like an inner tube. My hope is that it will make swimming more pleasant for you—I can just imagine you giggling uncontrollably while we spin you in it. You and brother each got a bottle of bubbles, that way Daddy and I can make them at the same time for a Bubblepalooza. The other two things I bought for you are pajamas and a sun shade for the window in Daddy’s car (it has zero tint). I am going to take those back. You just don’t really need the PJ’s at this point and only rarely ride in Daddy’s car.

I need to start thinking now for your birthday which is coming up in about 6 weeks. SIX WEEKS! Three years old blows my mind.

He is risen indeed!

2011-04-24T21:43:00.001-05:00

Our church has a sweet Easter tradition called "Flowering the Cross". The children are asked to bring a flower, either real or artificial, to their Sunday school class that morning. They take time to go outside where a plain cross covered in chicken wire is constructed. They place their flowers on the cross to symbolize Jesus has risen, He is alive! We did ours as a family in between services, and look how beautiful it already was, just halfway through. Liam had a masculine orange flower, but you had a pretty pink Audrey flower.

We took a few photos outside. Clearly it was too bright for you, but you are still super cute!

Pharmacy Update

2011-04-23T22:29:00.000-05:00

After telling you about our latest pharmacy drama, I filled out an online complaint to be sent to corporate. To save myself time I just copy/pasted as much of my post that it would allow me, and added an introduction, conclusion and the link to your blog so they could finish reading the story.

I received a prompt reply from the store manager about your cholesterol misfill, and felt he truly understood the gravity of the matter. His first concern was whether or not I had given you any of the meds, in case another med was mistakenly added. When I confirmed that I had not, his next series of questions focused on the lack of quality control. He wanted to know all the details so that he could further investigate. And lastly he agreed that the pharmacist’s (who is apparently the pharmacy manager) attitude was unacceptable and that he would address that as well. A follow-up call came from corporate making sure the store manager had contacted me and resolved the issue.

So was the issue actually resolved? I don’t know. We have the correct meds, I was issued an apology from the store. I don’t know what sort of reprimand the pharmacist will receive, if one at all. All I want is for him to be held accountable for his actions and words—too many people trust him with their very lives. But as I was encouraged, all I can really do is report our situation so that there is documentation. If another customer has a similar experience, a pattern might be established.

We surely will not be using their services any longer. I am simply unwilling to deal with the pharm manager after his apathetic response to your well being. You are much too precious—we are going to find a pharmacist to fall in love with you and give 110% while compounding your meds. You will do your part easily—you naturally win everyone over. My part is trickier, but I am determined to make it happen!

Ego Check, Pharmacy Dept

2011-04-20T22:06:00.009-05:00

I just have to tell you this story. I debated, because I don’t want this to be a place to vent frustrations, rather I want it to be a documentation of your life and our memories together. But this is a prime example of the type of people we often have to deal with, and it makes me crazy.

I picked up your cholesterol medication from a Walgreens on Dairy Ashford and Memorial this afternoon. Not super far, but could definitely be closer. Especially during traffic when I have to cross I10. When I arrived home, I unloaded you kids, got everyone situated, and then took the bottle out of the bag to place in the fridge. I didn’t even lay my eyes on it before I knew that it wasn’t right—the feel was completely wrong. So I examined it more closely, poured some into a med cup and it was immediately obvious to me that the actual medication wasn’t added to the cherry aqueous solution. They basically just gave me syrup.

Irritated (at them and myself—I know better than to leave the pharmacy without checking) I called Walgreens, was placed on hold, and then explained the situation. I was transferred to the compound pharmacist who, without listening to what I had to say, insisted it was fine. Because he did it himself. As if that should convince me my senses are wrong, and it does in fact look, feel, and smell correct. Round and round we go. I tell him what I have: very pink, thin, clear fluid; how it should look: white, thick, opaque. He says he remembered measuring it out. I tell him that after almost 3 years of giving you cholesterol, I am very familiar with its characteristics and this is not right. He tells me that he just ground it so thin I can’t see it. I tell him I won’t give it to you, it might as well be sugar water. Finally he agrees, “if it makes me feel more comfortable” I can come up there and watch him measure it out as he does it again. I am on my way.

So I pack you two back up and leave during 5 o’clock traffic. You vomit on a huge stretch of road with no shoulder to pull off onto. Jesus protected your airway during that time, but I am getting crankier by the minute. This guy better fly right when I get there.

I stand in line for several minutes before speaking with anyone behind the counter. I am asked to step aside to the consultation window, where I wait for another 5 minutes or so to speak with the pharmacist. I again tell him I am certain there is no medication, or if there is it is the wrong medication. I (from experience) never throw out a bottle of meds until I get a new one. So I brought last month’s bottle with me so that he could see from the remnants the difference in appearance. I hand the bottles over and he just holds them. He explains the process (of which I am fully aware) and tries to convince me that he did it so well that I can’t see the med. That he somehow managed to take the stick and the grit out of CHOLESTEROL. I am totally not buying. Why then wasn’t able to accomplish that feat last month? He agrees to remake it but has yet to crack open the bottles I brought him. So I reach over taking the bottles back and start opening the lids and ask him for cups to pour them into. He just sort of stands there and I ask him point blank, “Are you going to look at these or do you not even care?” His response?

“No. Not really.”

Are you kidding me? Seriously? I have no words. Literally, my brain went into shock and I don’t even know what I said. He scooped up my bottles and walked off so fast that so I might not have even had a chance to say anything. Which was wise, because any longer to process, I might have leaped over that counter and clobbered him.

I sit in the waiting area, stewing. Griping to Aunt Paula and Daddy via text. And in that time I decide that I am never coming back to this Walgreens…or any other for that matter. I have always hated the one by our house. The customer service is abhorrent. I also resolve to speak with the manager (but at a later date because I hate confrontation and don’t want him to call over the pharmacist while I’m there). And that this guy needs a new career. There are certain jobs that you have to be 100% right every single time. Mixing prescriptions is one of those jobs. Your cholesterol doesn’t mean life or death in the short term. But other people’s scripts do. If he wasn’t sure the medication was added, the action seems obvious to me. Throw it out and start over.

But if a pharmacist does make a mistake, they HAVE to be humble enough to realize it, apologize, and make it right. I can’t let someone mix your medication who thinks that a mistake is beneath them. How will he learn? If he had just taken the time to compare the two bottles, he would not have been able to deny something was amiss. I don’t expect him to know what cholesterol should look like. He has only done this 3 times. But I do expect him to trust that I know how it should look. Or at least see it for himself. He was much too busy to extend me a moment’s courtesy for even that.

After about 15 minutes he brings out the components so I can watch him measure them. Really, this is unnecessary. I just need him to remake it, and include the cholesterol. He tells me he just won’t grind it as fine this time, so that it looks more like what I am used to. I tell him, “No. Please. Try to make it look the same. I would love that.” He understands this is a test. If it looks like it did before, I will know I was wrong. If it doesn’t, we will know he sold me a bottle of cherry aqueous solution with a cholesterol label. He warns me it will take 45 minutes, and I tell him I’ll wait.

And wait. And wait some more apparently. Liam has missed dinner, bedtime has come and gone, and he is quickly losing patience. You are overdue to eat also, but I suppose that will have to be postponed as well. I let Liam cause a little mayhem in the toy aisle. Just a little. I buy him passies and snacks and that gives us a couple moments of peace. We are settling in because I figure this guy eventually has to admit he was wrong, and I am determined to out-wait him.

After two hours of trying to grind the cholesterol into oblivion, the pharmacist shows me the finished product. I tell him that is exactly right, just what I initially expected. He says, “Well, I still have a little more of the syrup, if I pour it in, it will be more pink”. So I ask him to pour the syrup in a clear cup by itself so I can see it. And when he does, it looks exactly like what I was sent home with originally. I pull out my iPhone to show him the picture I had taken—and then watch as the realization dawns on him. He throws his head back a bit, almost as if slapped and mouths the word, “oh”. Still, his ego stays intact and he doesn’t deem an apology necessary. All he did was repeat, “If I put this in it will be pinker.” I told him to go ahead. I don’t care what color it is as long as the is cholesterol included.

All that man had to do from the start was say, “I’m sorry, I’ll remake it, come pick it up in a few hours.” Instead I had to take three hours out of my already busy evening to babysit him. At this point, I have your medication and a lot of the fight has drained from me. But I am still resolute to start looking for another pharmacy that is willing and able to make your cholesterol—even if only for principle. It will be another time consuming and near impossible task. Still, I can’t trust this pharmacy, so I have no choice. And I still feel like I should speak to the manager because a pharmacist with that attitude is dangerous. I will add it to my never ending to-do list.

Audrey, I wish I could say this is the first run in of this sort we have had with pharmacies. Of the five we have used, four make it clear they don’t care for their customers’ health or well being at all. We have had to wait ridiculous amounts of time to be told “come back later”, meds made wrong, in wrong quantities, and been given other customers’ meds altogether. There is the same lack of respect for customers or co-workers and zero pride in their work. Our neighborhood HEB is the only one that does a great job in both the medication they hand out and their customer service. Way to go HEB. I am going to beg them to make your cholesterol.

And pray that Mr. Ego takes a big dose humility.

To go, or not to go?

2011-04-16T11:54:00.000-05:00

You, my love, did not enjoy our trip to the zoo. I don’t even have pictures because your face was red and puffy from crying. From the moment we took you out of the car and put you in the stroller, you began to fuss. We ended up carrying you through most of the morning. That wouldn’t have been so bad except it means (a) more sun exposure for you and (b) the person holding you had to juggle pushing the double stroller also, since Liam was out running around. We are getting to a point where we will have to make a decision I never thought would need to be made.

From very early on, I decided we would try to live our lives and treat you as normally as possible. I have seen a lot of families with special needs kids that stay at home because it is easier. They don’t take their kid to the usual kid places because the child doesn’t know any different. I would never judge those people because I know firsthand it is TOUGH. There are a lot of times that I know an event will be more exhausting than rewarding, but I pack you up and go anyway. There is no way for me to really know what you get out of outings like that, but I just feel like being around different people in different places is good for you, so we go. I never want you to be left out of family time and memories. Especially not just to make things easier or more convenient for us. And up until recently, your laidback attitude has made you the easier child to go places with, aside from the packing and planning and potentially awkward sick moments involved.

But these days you really don’t seem to be enjoying yourself. In fact, I would say you are definitely NOT enjoying yourself and act quite miserable. When I consider leaving you behind I feel terrible. But if you would truly be happier at home with a grandma, should I force you to go in order to ease my conscience? Is this just something we have to push through and then my easy-going girl will be back, or is this your new attitude toward being out of your comfort zone?

Clearly there is no right or easy answer. It doesn’t help that your disposition isn’t exactly predictable. While you hated the zoo, you loved Central Market. Both were outside, crowded and loud. This is just one of those things we will just have to ask God for guidance on, trust our gut and decide case by case. For now we are going to keep plugging away doing things as a family. And pray you get happy.

Finger Painting

2011-04-11T11:25:00.002-05:00

Mema is over today while I catch up from being sick all last week. She participated in your VI session. And here is the pretty springtime art you made! A bunny and a butterfly. Beautiful!

The family that gets sick together...

2011-04-05T12:14:00.000-05:00

Sticks together.

That is seriously the phrase I dreamt last night during my restless sleep, though the circumstances surrounding it fled the moment I awoke. If it's true, we are golden.

You, Daddy and I all got the same stomach bug (which apparently infected even my dreams). Being sick is hard enough. But being sick while having to take care of a sick someone else is nearly impossible. Each time you threw up I told you to “hurry, hurry” because I was fighting it off myself.

Today we are all over the worst of it, but feel horrible. Thankfully Bubby is still in his TV trance mode from while he was sick, so he has been happy to play in his room and watch videos most of the day. Daddy and I take turns sitting up with him while the other naps the day away with you.

Quick(ish) ER Trip

2011-03-30T21:38:00.009-05:00

Brother is sick. Daddy is sick. And yesterday you started feeling warm. I gave you a dose of Tylenol and you slept fairly well through the night. Liam, however, did not. He sounded like a creaky door with each inhale and exhale.

So this morning when you woke up looking worse than last night, I decided might as well take you to the doctor if I am taking him to the med center. So I called both doctors at 8:30, and got him an appointment for 11:30. The special needs clinic office personnel told me that there was only one nurse returning calls, so it might be awhile before I heard back to see if there was an opening. Honey came over by 9:00a, but since I had decided showering was a necessity for me, we weren’t ready to leave yet. You had fallen back asleep and I left you for last minute. Once you woke up, it was clear you were not doing well at all. You were pale, lethargic, your fever was up and you sounded horrible. You coughed and sputtered the entire way into town. As we got closer (about 10:30) I decided you were more concerning than Liam, and needed to be seen first. Having not heard back from the nurse I gave the clinic a call. Before I could even explain your situation, she interrupted me to say, “Mom, now remember I TOLD you we only have one nurse between two clinics. You are just going to have to be patient.” Uh. No.

Me: Well, I am calling to see if it is going to be so long that I need to take her to the ER instead.

Her: Mom, I can’t make that decision for you. If you think she is that bad, then go ahead and take her. But we take calls based on urgency, so it might be awhile before you hear back.

Me: It’s urgent. I’ll take her to the ER.

Goodness. That really ticked me off. So since I was aggravated, I took you to the ER. Now, here’s the deal. Since your doctor is at TCH anyway, the ER is just the bottom level. It’s not really like, oh no, you were in the ER. Basically I just wanted someone to look at you right away, and I knew they would. Last time you had this exact same thing, we waited too long before going to the ER and you ended up in emergency surgery, and intubated for 4 days. I was determined to avoid that again. And I was just angry.

Honey drops us off and we head inside. They take us back right away and two nurses ask all the standard questions. You actually don’t look as rough there as you did at home, and I haven’t heard a single cough since we came inside, so I spend some time convincing them you really are sick. Your arms and legs are modelled (I have a feeling that is not how it is spelled) and that is what concerns them. I explain that it actually IS much worse than usual, but we do always expect some of that from you. Right away they take us to a room and a different nurse asks the same questions and takes notes. She is concerned with your modelling as well, and grabs a doctor to look at you. He checks your capillary refill time and it is three seconds. Not bad. He explains a trauma is on its way in and all hands will be on deck for that. They were just making sure you didn’t need immediate treatment before everyone was taken away.

As we wait, you have two big diarrhea diapers. And then feel all better. Seriously, all better. Talking. Smiling. Laughing. ROLLING from side to side. Audrey, you don’t usually roll on a good day. I always suspect BM’s have to do with these episodes, but I am not sure how to prove it. Anyway, after being there about 45 minutes, the nurse checks on us again and asks how I can tell you were lethargic since you can’t move that much anyway. I tell her it’s mainly just because I’m mom, but usually you are pretty engaged and interactive…sort of like right now. She agrees you look much better.

(Here you are..."sick".)

At this point, Liam is my main concern. So I explain to her how your brother is also sick in the waiting room, I need to get him to his appointment at 11:15, can I go now? No. They doctor had to check you out first. But, I reason with her, you don’t have fever, your 02 is 100%, you are active and happy, not coughing…there is no reason for us to stay. You are just taking up a room. This ER idea is backfiring.

I understand it is totally liability. I do. But what happens if we just leave? She said I would have to sign a waiver and they couldn’t stop me but they didn’t like it. I didn’t want that on our TCH “record” so I agreed to stay a bit. I called right away to reschedule Liam's appointment and immediately the doctor walked in. The nurse must have told her I was thinking about leaving.

I really liked the doctor. After having spent the first part of my time there convincing everyone you were sick, I spent the next ten minutes convincing her you weren’t. After going over your medical history, she agreed it was the right thing to bring you in, but that there was no reason for you to stay. So she would discharge us. What I didn’t know was that it would take another hour to get those papers. And only then because I opened our door and stood in the hallway, staring at the bank of nurses in front of our room. We finally walked out to where Honey had the car pulled up around 12:45. We didn’t make Liam’s appointment (it was rescheduled again for 2:30) but we had time to get some lunch.

Here is the kicker. As we were checking out, they did one last exam. Your temp was up 2 degrees. And as we walked outside, you started that coughing again. Oh, Audrey. What is it with you guys? As soon as we are in the vicinity of a doctor you miraculously feel better.

As frustrated as I was at times, TCH is an awesome place. I heard a knock while we waited in your room, and it was a lady with a nice little coffee cart offering free coffee to (most likely) scared and stressed parents. That's so thoughtful. And even though I was going crazy sitting in that room while you were fine and brother was sick, we probably still got in and out faster than if we had gone to the special needs clinic. Exhausted, our day wasn’t over…you can continue reading the saga HERE.

Taking Care of Business

2011-03-29T22:01:00.000-05:00

We went to Dynamic Orthotics today, just the two of us. Liam is sick, so he stayed with Grammy. The purpose of today’s visit was to take care of our PMR checklist.

We had them tighten your night-time AFO’s and took measurements for the SPIO suit and Hensinger collar. Unfortunately, at this point it looks like the collar and TED stockings aren’t made in a size small enough for you. Mr. T is going to look for an alternative, but doesn’t sound too hopeful. We will see what he has come up with when we go back to get the SPIO suit in a couple weeks.

Cheers for Audrey!

2011-03-28T22:01:00.000-05:00

You played in the "intelletainer" for a good 15 minutes or so today. No weight bearing, but you were actively trying to push buttons. Each time you played the music, Liam and I would cheer and clap. I was making dinner while you two played, so even if I got distracted and forgot to say "Yaaay!" your brother would remember. I enjoyed watching his face light up from the kitchen each time. And he practiced such restraint not pushing the buttons for you. He is proud of you when you do big kid things.

Little Lady Leprechaun

2011-03-17T18:27:00.001-05:00

Here you are in your St. Patrick's Day outfit. Look at these adorable socks your Aunt Shanna got for you! I know it's the 18th, but since you didn't get to wear it yesterday, you are wearing it today.

This is the only picture we snapped before you got sick at the dog park. (Oh yeah. You started throwing up again two days ago. You made it a total of 14 days.) Poor little shnook.

Priceless

2011-03-16T10:46:00.002-05:00

Audrey. We almost had a major tragedy. We almost lost ALL our pictures. I mean ALL 19,000 if them. It is a long story how, but I deleted every single one off our computer.

But Daddy is our hero. Through the Holy Spirit’s prompting I’m sure, he started backing up our computer files through Mozy about a month ago. So with only a little work we were able to get them all back. Best $5 bucks a month we could have spent. I would have been devastated. The pictures of our little family are beyond value to me.

PMR Checklist

2011-03-15T19:18:00.000-05:00

Today was our PMR appointment with Dr. W. This is the course of action we have decided on for now.

*Call The Wheelchair Shop to have your seat adjusted. We discovered your tailbone goes towards the left. So while scoliosis isn’t a problem that needs to be addressed at this point, you look crooked when you sit. This can be fixed by leveling your seat pad accordingly. We also need him to adjust your stander.
*Take a script to Dynamic Orthotics for a hensinger collar (for use in chair to bring head forward), TED stockings (for circulation in feet/legs), a SPIO suit (compression for body awareness and support).
*Gradually shave down incline of shoes as you adjust.
*Look into aquatic therapy and massage therapy.
*Increase your diazepam to 1 ml, twice a day.
*Get a speech eval so that we can seriously pursue switches as your primary communication device.
*Use kenesio tape for positioning of feet and wrists.

I left the doctor with a thick stack of papers and what I felt like I was a huge to-do list. But it looks much more manageable written out like this.

She also explained to me that you have dystonia. It is a neurological disorder that affects muscle movement. No treatment exists other than positioning. But it explains some of your odd movements and behaviors. What I thought was seizures 18 months ago (which led us to discovering your hydrocephalus) is perfectly explained by dystonia. Just good to know.

I am also glad to know about your tailbone. You have always had such a…different….little bottom. During the appointment I mentioned your tailbone to Dr. W, and she sort of rolled her eyes and said, “Ahh, the tailbone. Parents are always worried about the tailbone, and it is almost always fine.”

But in the usual Audrey fashion, when she took a look she had to step back a moment, looked again, repositioned you, and then said, “Huh. This is interesting.” Going toward the left makes sense—now we just have to figure out how to make you sit on your sitting bones, instead of you crooked tailbone.

There is never a dull doctor’s visit with you Missy Moo, that is for certain. Thanks for always being such a trooper. You never complain about having to go into the Med Center, when you have every reason to. Maybe it’s because you know that we almost always make progress whenever we visit a doctor. Or maybe it’s just because you are the sweetest girl ever. Probably that one.

Early Birds

2011-03-15T06:00:00.000-05:00

Dear Audrey & Liam—

Please go back to sleep. It is 6:00am which is really more like 5:00am. With the time change, nobody should be awake before 7:00.

Love,
Mom

Days Without Vomit: 12!

2011-03-14T15:44:00.000-05:00

Since the Elecare makes you gassy, I have been venting you more often. I think that is the key.

Time will tell.

Exhausting

2011-03-10T20:30:00.001-06:00

That is the only way to describe today. I got brave after taking you to the doctor by myself Tuesday, and so tried again. Only this time with Brother in tow. Oh dear.

We had a 9:30 appointment first, so we loaded up and were out the door pretty close to 8:30. Made it there no problem and were called to the back quickly. Mr. T brought out the new AFO’s and tried them on. He wasn’t happy with the left, and said he could have a new one ready by the time we were done with our next appointment. Deal.

So then we headed down Main to TCH for genetics. Nothing really discovered there, although he asked many questions about your recent behavioral changes—most notably the fussiness. He thinks GI holds the answer to that. Right now I blame teeth.

Back to Dynamic Orthotics for your new, new, NEW AFO’s. They fit great! Whoo-hoo! He took a look at your back since I have been considering a back brace. Mr. T thought one was appropriate, and found the shape of your spine concerning. As someone who works with kids like you often, that doesn’t sound good. He gave me an idea of what he thought was wrong, but since we see PMR next week I will wait and explain more then.

We arrived home about 2:30. Since neither of you shnooks took a moment’s nap throughout the day, we all hit our beds hard. And didn’t even consider waking up until 6:00. This was just fine because Daddy had a late meeting and no dinner needed to be made.

Overall, you both were amazingly well behaved. You fussed quite a bit at the first appointment, but did better as the day went on. Liam started out great, but was pretty much sick of his day long captivity to either the car seat or stroller by the last appointment. Y’all are great kids. Even still. That wore me out.

Now I need to begin packing for tomorrow’s trip to Austin. Sigh.

What A Production!

2011-03-09T17:24:00.006-06:00

I am SO impressed!! I set up Tom Cat (as we affectionately refer to him) next to you in your bed while I made Liam's dinner. When I came back, I found an email composed with an attachment. I deleted out of it, not knowing what it was. It then took me to the Talking Tom screen and gave me several options including Facebook, email or YouTube. I didn't know what all that was for, so I hit the only button that made sense--play. And then this video started. That means you pressed record, did all this talking and punching, and then tried to email it. You almost sent me an email Audrey! After making a movie! I guess you wanted to make sure I saw your accomplishment.

In the 45 seconds this video plays, you did some good talking and tapping. I think it shows just how much switch toys will play into your future.

Tom Cat does come with emotional hazards. If the phone rings during playtime, it is sure to induce tears. And it never fails to ring.

One In A Million

2011-03-08T18:01:00.003-06:00

So much to tell you from today. You and I spent a day in the med center while Brother was at MDO. This is the first time I have ever taken you there all by myself. I always have someone ride with me in case you throw up while I am on the freeway. But we have gone another 6 days without vomiting, and I needed someone to pick up Liam in case we were not home by 2:30. So you and I ventured out on our own. Despite the hard rain and very slow traffic that I did not count on, you did great!

First stop—GI. Long story short, we decided to leave well enough alone for now. When/if (who we are kidding?...when) things take a turn for the worse again, we will do an endoscopy under anesthesia to make sure the Hirschprung’s hasn’t made a reappearance.

We were done at TCH in record time, so we made a slight detour into Target as we drove down Main. And Audrey, for the first time in your entire life, I was frustrated by you. Earlier at TCH, I chose to use the umbrella stroller for you thinking it would suit our needs perfectly. And it would have except you decided before we even reached the door that you hated it. I mean pitiful, heart wrenching cries, big tears, the works. I got us inside the doors and examined you closely. There was nothing that looked at all uncomfortable or painful. I even tried putting your blanket underneath in case your non-existent bottom needed extra cushion. Still screaming. So I carried you in while pushing the stroller. As we left the doctor, I strapped you back in, thinking you would be more agreeable. No. Thirty seconds later was the same story. You had taken a firm stance on the stroller and were not going to waver.

So back to our Target detour. To avoid the same scenario, I did not take a stroller. Instead I left you in the car seat and stuck you in a cart. We weren’t two cars away before you started up again. And didn’t stop the entire way through the store. People kept asking what was wrong with you. Nothing was wrong with you. You didn’t need a diaper change. You weren’t hungry. You weren’t in any sort of pain. Your feelings didn’t get hurt. You weren’t overly tired. NOTHING. Of course, nobody believed me –I wouldn’t have believed me. You were super loud and convincing. But you just wanted to be held. And pushing a broken cart through Target while holding a baby connected to a pump inside that broken cart is not an easy feat. So I held you as much as I could, but when it came time to check out you just had to cope. Which you didn’t do well. We walked outside to a downpour. No sense in waiting I thought, let’s just run for it. I did and was soaking wet by the time we made it to the car. You were dry thanks to your car seat shade. We got in the car and the rain completely stopped. On to the next appointment.

I just carried your car seat into Dynamic Orthotics. More temper tantrum from you. I picked you up, you were mysteriously better. Grrr. We met Mr. T and I really liked him. I had put your braces on 15 minutes ahead of time so that he could see the color your feet turned. He agreed that blue and purple weren’t ideal. After checking you out thoroughly, he came to the realization that it wasn’t the pressure of the braces but the positioning. Just holding your feet in a corrected position for about 30 seconds causes the blue hue that takes minutes to go away. He wants PMR to check you out, which thank you Jesus, we have an appointment with on Tuesday. Otherwise it would set us back several more weeks. Mr. T suspects that the correction pinches an artery which is potentially problematic. But in the meantime we agreed to make a new set of AFO’s that correct enough for you to stand with the assistance of a wedge. He rushed it so that they will be ready Thursday morning before our appointment with genetics. That way we will have them a few days before we see PMR. Not everyone is as considerate, and we appreciated it.

As a side note: Mr. T says that out of 33 years of this career, he has only ever seen one other child with the same issue. Hmph. I told him he had no idea how many times I have heard that from various specialists.

We were quickly homeward bound, and made it in enough time to meet Liam at church where Grammy had just picked him up. Despite the pushiness on your part, I had a really great day with you shnook. Sometimes it is nice just to hang out the two of us.

Poopy Pharmacy

2011-03-04T20:22:00.000-06:00

Daddy was in our bedroom this evening with Bub when I discovered something amazing. I held it behind my back as I approached Daddy. Our conversation went something like this:

Me: Do you want to see something amazing….miraculous even?
Daddy: Of course.
(I reveal a baby wipe and then dramatically unfold that wipe to show what is inside.)
Daddy: Is that poop?!?
Me: Yes.
Daddy: Gross.
Me: Gross?? Are you kidding me? This is Audrey’s. Audrey’s POOP. And I could pick it up. Cause it’s a ball. It is not a pasty mess stuck to her rear!
Daddy: Oh yeah! Awesome!!

Audrey, this is the first time in at least two months that you have had a well formed BM. Your bottom is pretty much healed up and life is great!

Daddy has a good theory. Your cholesterol med used to be really, really thick. Your tube became clogged easily (I can totally see how it clogs arteries). One day…maybe a year ago?...we got a refill and it felt different. When I shook it, the med sloshed instead of sludged. I thought it was drastically thinner, but Daddy couldn’t tell the difference. It was one of those things where I said, “Remember how it used to feel, used to sound? It never did this before. Remember??” and he would say, “Oh, yeah, I kinda remember now.” (He loves me and just wants to be agreeable. He didn’t remember at all. But to his defense, I usually pulled meds more often.)

I have very little confidence in that pharmacy anyway and their customer service is atrocious, but due to the rare nature of the medicine, haven’t found another willing to compound it. So I called Dr. L asking her to call a specialist for the cholesterol formula, and then to call our pharm to make sure they had the recipe right. What they read to her was correct. Since Daddy didn’t notice a difference, the recipe was right, and I had no concrete proof, I convinced myself I was imagining things and let it go. Although every time we got a refill I thought to myself, it just wasn’t right.

January, we received a letter from our pharmacy saying they lost their contract with Blue Cross, and our script would now cost almost $400 a month. At that point, “find a new pharmacy” jumped to the very top of our to-do list. While I had the flu, I sat with Daddy as he called pharmacy after pharmacy, looking for one that would compound, take our insurance, and order this rare ingredient. Not easy to do. Eventually we found one. And guess what. As soon as we received the new bottle, it felt just like I remembered it should.

Another observation of note: all the other SLO kids get their cholesterol in a cherry aqueous solution or a soy solution. With the old pharmacy, yours was always in a non-cherry, but aqueous solution. Since you take it by g-tube, I never complained about this seemingly insignificant detail. But now that the new pharmacy does make it in a cherry aqueous solution, and is now the right consistency, it makes me wonder what other seemingly insignificant details they left out…

The odd part is our old pharm transferred the script AND the recipe to the new pharm. So they knew how to make it—just did it wrong? I wouldn’t be at all shocked. Angry. But not shocked.

Back to Daddy’s theory. Since your BM’s started down the road to recovery right about the time we switched pharmacies, he thinks that you are getting more, or at least more quality, cholesterol now and it makes all the difference. He just might be right. And since your cholesterol levels have been abysmally low, it will be interesting to see if they start to rise within the next couple of months. And if that’s the case…I don’t know what I am going to do about our old pharmacy. But I have a feeling, they aren’t going to like it.

Audrey Armstrong

2011-03-01T20:09:00.000-06:00

Here is a a short clip from your physical therapy session today. You must have knocked this bottle over more than 20 times. I loved watching you play (work) so intentionally. You were super pleased with yourself, and of course I was very proud also.

Brother kept coming over to take the bottle, setting it up in front of himself, and knocking it over the exact same way you did. Then he would look to us with a big smile, expecting cheers like you received. Even though it was cute, it wasn't quite as impressive to me, and a little obnoxious that he kept taking your toy. I expected you to get cranky with him. I shouldn't have been surprised--you thought it was hilarious. He doesn't yet know how blessed he is to have such a easy going sister who loves him so much.

Strollin' Along

2011-02-24T19:55:00.004-06:00

I bought a new umbrella stroller for Bubby—I hate to unload the “Cadillac” double stroller when it is just the two of us. For the same reason I was going to buy a stroller frame to snap your car seat into when it is just you and me. But rather than keep three strollers in the back of my car, I decided to wait until Liam’s came on the off chance it would work for you too. I figured it wouldn’t be supportive enough, but I was pleasantly surprised! Hurray!

Look at how absolutely ADORABLE you are! Good thing you are mine, otherwise I would have to steal you.

AwFulO'S

2011-02-23T20:05:00.002-06:00

Well, stinky news. Mrs. Liza (PT) came over today and checked out your new AFO's. She didn’t like them either. She pointed out what exactly doesn’t work, so that I can tell the orthotics shop when I ask for them to be remade.

1)Your feet are entirely too red, for too long once the braces are removed.
2)Your toes are purple. (Although mostly I attribute this to you being Audrey.)
3)There is extra space in the ankle--where you need the most support.
4)Your heel doesn't completely make contact with the mold.
5)They over-correct and when we don't use socks, we can see where they push so hard your feet turn white.
6)Your left toes are cramped.

I hate that you have to wait longer before you can get in your stander. But I am glad I trusted my gut and didn’t torture you by making you wear them these last couple weeks.

**This is officially the worst post title ever published. Just know that I am aware.**

Caloric Decrease

2011-02-17T21:35:00.003-06:00

I was certain you would have gained weight over the last month since overall you haven’t thrown up as often and I increased your feed. You ended up losing .15 kilos. What?? So we started going over what could have gone wrong.

It turns out there was a miscommunication with your nutritionist and I have been underfeeding you all this time. I could go into what all happened, but really it doesn’t matter. Long story short, I should have been using 11 scoops to make your daily 24 ounces, but I was using 9. Because I gave you that extra nightly feed, you really pretty much broke even. But remember that caloric increase I was so proud of? Yeah. Didn’t actually happen. Oops.

Let’s just say we were introducing you to Elecare slowly.

Rear Control

2011-02-15T20:15:00.002-06:00

We saw Dr. K today! It had been a very long time since we last visited him. We were supposed to go back last September, which would have been a year, but thanks to scheduling conflicts we just now were able to make it work. So almost 18 months later, 30 months after your colostomy pull through, your bottom “feels amazing” according to Dr. K. He really has a way with words and always makes us laugh.

It’s exactly what we wanted to hear! No need to start dilations up again, your scar ring is soft and not causing any issues. In fact, he thinks your Hirschprung’s is very much under control. It is one of those diseases that once you have it, there is no “cure”. You can treat it, but it is always there. However, Dr. K doesn’t think you act like a Hirschprung’s patient at all. This is surprising considering our track record. We’ll take it!

I mentioned to him my theory of your episodes being bowel movement related. I told him how I thought you got backed up despite your chronic diarrhea and that’s why once a month or so you vomit non-stop and have huge diapers. Dr. K was able to confidently tell me that at this point, that is not the case. He saw your hip X-Rays and could see that your “tank was completely empty”. I was positive my theory was correct. Experience had practically proven it to me! So now I am back to square one on all this. Dr. K thinks we ought to have GI try some exploratory measures, such as biopsies or probes, to figure out what is happening. An absorption issue was thrown out there as something to look into. But really, the possibilities are countless. One thing is certain. We need some answers. Because we are going on our 6th straight week of diarrhea, and that’s not good for anyone.

Love Bug

2011-02-14T08:52:00.001-06:00

Happy Valentine’s Day my love! I have had the flu since Thursday, so no kisses or hugs for you. I want you to stay healthy. I miss you a lot. It must be confusing for you to occasionally hear my voice, but never feel me love on you or hold you. I wish I could explain why. Well, I DO explain, but I wish I knew that you understood. We will make up for lost time when I am no longer contagious. And in the meantime, Daddy is staying home with you and Liam today while I heal, so I know you will have a great day.

Test Results

2011-02-11T20:54:00.001-06:00

The results are in from your tests last week:

Your cholesterol level is up from 7 to 16. That’s a great improvement! Still unbelievably low for anyone, let alone someone who gets three doses of straight cholesterol daily. But at least we are going the right direction on that. Your 7-DHC is still going up which is the opposite direction we want. And usually when cholesterol goes up, 7-DHC goes down. So I am confused on that. We need to get a specialist to look at you. I know I say that all the time. But really, I think it’s so important at this point. Unfortunately they all live way north and most aren’t accepting new patients due to lack of funding. I think they would love to see you because you are such an abnormal case. But that may be exactly why they aren’t interested. Perhaps they want to see the most average of SLO kids in order to have their research go further.

Your hip X-rays showed no change, and looked fine. Still, the concensus is that your hips most likely slip in and out and we just X-rayed them on a good day.

Your scoliosis is getting more serious. (Which of course, we knew just by looking at you.) The nurse read me the results, but couldn’t really interpret them. That will be a job for PM&R when we see them in March. I jotted down some notes, and now can’t find that sheet. I'm a little sick today and my head is foggy. But if I remember correctly, last time you had a 16 degree curve. Now there is a 16 degree, AND a 44 degree AND a 18…or something like that. But basically it sounds pretty “S” shaped. I sure hope we don’t have to do a back brace but we might be headed that way. A back brace would be better than surgery, that’s for sure.

Grow up throw up!

2011-02-10T21:21:00.002-06:00

Ugh. You have been throwing up so much lately. What’s up with that?? Three weeks without getting sick was enough to make me think we had crossed a threshold into a vomit free (or at least less vomity) life. And here you pick up, right where you left off. Nothing has changed in your diet. You don’t seem to be sick. I have no answers. And also no sleep because we have to suction you so often throughout the night. Today I am super frustrated with SLOS.

Seriously, nothing makes me crankier than bolting upright in bed at midnight hearing you wretch, or choke, or whatever it might be. Throwing off my covers while simultaneously smacking Daddy to wake him up, saying just one word, “Audrey!” RUNNING down the hall, fumbling with your suction, trying to focus my eyes so that I put it in your mouth and nose rather than poking you in the chin or eye. Watching Daddy stagger in the room 30 seconds behind me and having to ask him to turn on the lamp--once, twice, three times--because he doesn’t wake up quite as quickly as I do. Asking Daddy to take over while I go to the bathroom, and then doing the same for him when I come back. Calming you down, wiping your face and hair clean, changing your diaper, clothes, blankets. Lurching back down the hall, collapsing into bed where I lay seemingly forever with my mind racing while you whimper in my ear over the monitor. Drifting back to sleep…just in time to start all over again an hour or so later.

Daddy and I learned a long time ago this was a task best done together. We tried taking turns…me during the week and Daddy on weekends. We tried taking turns throughout the night…“I’ve got this one if you’ve got the next.” But experienced has proven that there is something about having the other suffer next to us that preserves our sanity.

One thing I should say clearly--I am never frustrated because of you. Frustrated along with you and frustrated for you. And obviously (selfishly) for me. Which is absurd because really, you are the only one actually suffering. You are such tough stuff, it’s unbelievable.

Days Without Vomit: Zero

2011-02-07T10:02:00.001-06:00

Our streak ended last night when you woke up sick, and again this morning.

Boooooo.

Debt Free

2011-02-03T10:03:00.001-06:00

As of December 2010, we are officially (as far as I know) out of medical debt! This was a day that, quite literally, I thought would never happen. At times it seemed so overwhelming. As if our monthly contributions barely made a dent in the massive amount we owed, even though it was hurting our budget and bank statements.

It was so important to us to get it paid off as quickly as possible. Firstly, because God calls us to live a debt free life, and pay what is owed as soon as able. Our first financial priority was to tithe, pay the basic bills, and the rest went to debt. Secondly, because it causes anxiety having that much debt. I hated checking the mail because I knew there would be more than a couple invoices daily. But I made sure to do it before Daddy got home, knowing it would be more stressful for him as the provider. And then thirdly, because we were given amazing services and wanted to pay for what we received. YOU, our little miracle! Every cent went toward your well being and was beyond a shadow of a doubt worth it.

Today I submitted our 2010 taxes to be processed as soon as the IRS is ready. Our refund is almost exactly what we owe on the Trailblazer, so it will be paid off this month, two and a half years early! It feels so good to be essentially debt free. All that remains is our mortgage, which we will continue to pay off as quickly as possible. I love handling our money the way God intends.

And there is a very real chance that if it weren’t for you, our priorities wouldn’t be what they are. God showed us, through you, what is important. There are times I definitely have to stave off the “gimmies” but overall, I have more of a desire to give to others, than spend on “stuff” for ourselves. I realize how blessed I am—and not in the cliché “oh I am so blessed” kind of way. I mean, honestly B-L-E-S-S-E-D, the I-have-never-been-without food-water-shelter-or-transportation-a-day-in-my-life type of blessed. And on top of that I have a closet full of clothes (don’t love all of them and half don’t fit but I never have to go naked in public), an awesome new cell phone, flat screen TVs, Daddy takes me on dates, and I can have chocolate every night if I so choose (and let’s be real here—I always DO so choose).

We may not be vacationing in Europe this year, but we have everything we need, most things we want and still have some room to breathe. Thanks for being the instrument God used to teach us a big lesson. And be thinking about how our family is going to give big this year. I am not satisfied with bare minimum anymore.

Audrey-ella

2011-02-02T12:51:00.002-06:00

Yesterday Ms. Mary Beth (your vision teacher) came and brought you a new toy. It is called an AbleNet. Basically it is a switch toy adaptor, but we can plug anything with an electrical plug into it. So a radio, your disco ball, blender…possibilities are endless. And then you can make those things work by pushing your sensitive button, which you do so well.

We started by practicing with your disco ball—you thought it was ok, but you are more auditory than visually stimulated. So we pulled out the hairdryer and pointed it in your direction. That was more like it! You pushed the button for a very long time. You have always loved the wind in your hair.

Ms. Mary Beth had a good idea. She suggested we assign you chores like vacuuming or shredding paper. You can push the button to make the machine work, and I will do the rest. Whenever you let go I can say, “Audrey, we have to finish our chores, push the button.” I think it is a great idea to give you some responsibility and teach you to be helpful. Plus, it is just cute to think of you doing chores!