Monday, October 31, 2011
And the results are in...
Dr. G just called. The biopsies turned up nothing. Which is great news, except we are no closer to figuring out these little episodes than before. So now our game plan is to just wait until the next time we find blood and then insist the ER call Dr. G to scope then and there. You sure are a mystery chica!
Hello Kitty!
When we left for Trunk or Treat yesterday afternoon, you felt pretty miserable. Things didn't improve too much as the night went on. You absolutely refused to smile for anything. You can read about our attempts to get a good picture on Bub's blog HERE. So in lieu of a Trunk or Treat picture from last night, I am posting a picture of you after school today. Cutest kitten I know...
Friday, October 28, 2011
Colonoscopy/Endoscopy/Glaucoma Exam
In some ways the colonoscopy was probably easier for you than it was for an adult:
*You didn’t have to actually drink the 32 oz of bowel prep—I just pumped it in.
*You didn’t have to stay in the bathroom all day while it worked—I just constantly changed your diaper.
*You don’t mind missing a few meals—the consensus is you probably don’t feel hunger.
*You weren’t at all conscious for any of the procedure—general anesthesia.
But in other ways it might have been tougher:
*32 oz in an hour is what they expected. It took 8 hrs and you still threw quite a bit of it up.
*Despite the diaper changes every 15 minutes or so, your diaper rash was ugly.
*You cannot afford to miss any meals. Seriously.
We arrived at 6:30am and waited until about 8:00am for your turn to be taken back. I was getting nervous about your IV stick. Overnight I did my best to keep you hydrated during and after the bowel prep, but I had to stop fluids at 4:30am. I’ll never forget the time it took 28 tries to give you an IV because your veins weren’t plump from dehydration. What a nightmare.
In my experience, anesthesiologists are notoriously confident, often to the point of arrogance. I always give them a laundry list of complications from past surgeries so that they know exactly what lies ahead. Not much frustrates me more than when one shrugs me off, assuring me that it won’t be a problem for HIM. As if he or she is somehow immune to your irregular airway or tiny, shriveled, rolling veins. Without exception those doctors have come back to me with a story about what a hard time they had getting you prepped for surgery, and all the excuses why.
So when I spoke with the anesthesiologist, I was bracing myself for that prideful attitude that drives me crazy. I was pleasantly surprised when he listened to all I had to say, asked questions and then followed through with being as prepared as possible. He had a fiber optic scope in the room, asked the on call ENT to be ready to help, and just made a point to be well-informed. And wouldn’t you know? After the procedure that man humbly told me he got your IV on the first stick and had no problems with intubation. Not only that, but he said he can see why other doctors have had difficulty, and advised me to continue stressing these issues to future anesthesiologists because the next time might not go as smoothly. I am definitely requesting Dr. J for the any other procedure we have done. Amazing what difference attitude makes.
As for the findings, nothing significant. Your glaucoma is under control and pressures are fine with the meds. Dr. C did see that your optic nerve is more open than last time. At least, I think that’s what he said. I was sort of wrestling with your brother when the doctor came to speak with me. I need to call his office for a quick biology lesson. But he prescribed another daily eyedrop and wants to see you back in 4 months.
Dr. G didn’t find a whole lot either. He noticed that you had some linear creases in your stomach from frequent retching. Your stomach is compressed each time you vomit and it has resulted in these stomach wrinkles (totally my terminology—they are actually called gastro…something). He said these can be irritating but there isn’t anything to be done. Other than that, he saw nothing of consequence. Certainly nothing to explain the bloody stool and vomit from early September. He took biopsies from your esophagus all the way down to your bottom and those results are expected back early next week.
All in all, it was an exhausting day for everyone. You, Liam and I took a 3.5 hour nap when we got home at 2:00. Thank goodness it’s the weekend so my littlest trooper can rest up!
*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!
Thursday, October 27, 2011
Wednesday, October 26, 2011
Prepping for Friday
Tonight we start your Pedialyte diet until your colonoscopy/endoscopy/glaucoma exam on Friday. (Whew! Talk about multi-tasking.) Tomorrow afternoon we will begin the bowel prep. Your diapers are somewhat normal these days, so I am a little concerned that this cleanse and exam will throw us into irregularity again. But you constantly surprise me at how well you bounce back from these sorts of things. I bet you do beautifully.
Sunday, October 23, 2011
Bed Crashers
Liam and I went to Austin this weekend for Aunt Lesley’s bridal shower while you stayed home to help take care of Daddy. It sounds like your time was full of snuggling and relaxing. I know you missed us, but was it a nice break? Just to have some peace and quiet for a full day? Next time I vote we send the boys off and you and I enjoy a girl’s weekend. You in?
Bub and I got in about 9:00pm on Saturday night. We all assumed you were asleep since Daddy put you to bed 45 minutes earlier. Maybe you waited up for us, or maybe you woke up at the sound of our voices. Regardless, we heard you calling for us and that's all we needed to crash into your bed to give hugs and kisses. Your R&R was officially over…and I think you were ok with that!
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!
Friday, October 21, 2011
Not Sheepy
Lately you have been waking up at 5am every single morning. Why?? You don’t fuss, you just talk loudly in your room. Bedtime hasn’t changed, naptime hasn’t changed…what’s with the early wake-up call?
It really doesn’t bother me. As a mom I have an uncanny ability to completely tune you out while I sleep. Occasionally I wake up just enough to register that you are talking and roll over. But if you are in any sort of distress, I bolt out of bed and am in your room before my eyes fully open. So my frustration is more for you than anything else. I need to get you moving by 7:00 to have you ready on time. And pretty much without fail, you fall back asleep around 6:45. That makes you one tired little shnookie towards the end of your school day.
I would think that maybe you are just getting older and don’t need as much sleep. But I can’t keep you up much later at night. Daddy and I need to spend some time alone and we aim to be in bed by 9:30 ourselves. And I can’t take away your nap—not when you come home so exhausted each day.
So I guess we will just stick with our current schedule since it’s working well enough for the time being. Thanks for being so considerate and letting the rest of the house sleep. You are such a sweet girl.
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.
Wednesday, October 19, 2011
Soy vs. Cherry
When we tried the cholesterol in soy oil, you could not keep it down. You went from throwing up once every few days to throwing up a few times every day. Nights were pretty miserable. I am fairly certain we checked for soy allergies a couple years ago but it came up negative. Maybe I am mistaken, or maybe an allergy has formed since then? Regardless, you could not tolerate it.
I thought that by switching you back to the cherry aqueous we would see an immediate and drastic improvement. I was right about immediate, but not so much about drastic. Things are better, sure. But we aren’t back to that sweet spot where we go days without incident. It takes your body much longer to adjust than the average person. Plus our trip to Dallas didn’t help—something is different in the air there that gave you a runny nose and a little cough. I am hopeful you will return to normal in the next week or so.
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.
Tuesday, October 18, 2011
Welcome Home!
You had quite the welcoming committee when you arrived home from school today. As soon as we heard you pull up Aunt Lori, Grace, Frank, Mema, Liam and I all came pouring out of the house to meet you. Everyone loved seeing you get off the bus and thought you were the biggest of girls. What a fun surprise for you!
Thursday, October 13, 2011
Let there be sight!
I spent much of last Friday on the phone with the place we get your contacts from. It was so exhausting that I don’t even want to go into the details. But the short version is that because they didn’t properly file an insurance claim back in March or do their due diligence following up on it in any way, shape or form, they expected me to either pay $1000 or wait a month at minimum to get a new pair of contacts when you had zero. (Despite the length of that sentence, I assure you that is, in fact, the short version.) After researching the situation on my own and sharing my findings with the woman who failed to do her job correctly, she agreed to go ahead and order a new contact for your good eye immediately. She probably thought it best I didn’t ask to speak to her supervisor. I'll give her credit for that one wise decision. Today I got the call that your contact came in—I’m so grateful it is here in time for our trip to Dallas this weekend.
Still, we paid for it with $255 and a week of sight. We should get the money reimbursed but obviously not that week. Whenever you are without contacts I see a clear difference in your behavior. Even your teachers saw a difference—the first day of class after losing your last contact brought a “1” for tracking in circle time on your daily report. You have always gotten all 5’s before. I feel like we take a couple steps back when this happens, and it could take us months to regain that ground. For that reason I need to be more diligent in checking throughout the day to make sure your contact is still in your eye. And you need to be less diligent in popping them out. Deal?
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?
Wednesday, October 12, 2011
Report Card - 1st 6 Weeks
Today I found your REPORT CARD in your take home folder. I wasn’t expecting a report card!
It’s not your typical report card…no grades or conduct scores. Instead it marks progress towards your goals.
Here are your goals…a little humdrum to read but super important to document I think.
Audrey will respond to various tactile stimuli in 2 of 3 opportunities with no more than 3 verbal, tactile and physical reminders for 6 consecutive weeks in various supportive positions.
Progress: 2/3 trials—you did it!
In various supportive positions, Audrey will activate a switch for a cause and effect response using her hand in 2 of 3 opportunities with no more than 3 verbal, tactile, and physical reminders for 6 consecutive weeks to participate in various classroom activities.
Progress: 1/3 trials—well on your way!
In various supportive positions, Audrey will respond to various sensory stimuli in 2 of 3 opportunities with no more than 3 verbal and physical reminders.
Progress: 2/3 trials—success!
Under comments Mrs. W wrote, “Audrey has done beautifully this first 6 weeks of school. She is usually awake, alert, and eager to learn. Loves to smile and coo and melt our hearts.”
I give you an A+ Audrey Boo!
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!
Tuesday, October 11, 2011
Cholesterol Update
I got a call from the pharmacy two Wednesdays ago letting me know that the pharmacist would track down the recipe and make your cholesterol in the cherry aqueous. On Friday she called back saying the recipe couldn’t be found and that she could “guess” how to make it but couldn’t guarantee its quality. Really?!? I barely knew what to say to that other than, “Uhhh…no. Either call a specialist for the recipe or I’ll just have our old pharmacy make it.” Tuesday I was told she was able to get the recipe and it would be ready Friday. My phone call to check the status on Friday afternoon apparently served as a reminder for the pharmacist to make the cholesterol and I wasn’t able to pick it up that evening. They were closed Saturday through Monday, so we will see if it is ready and correct when I get there this morning.
I’m not thinking this pharmacy is going to make the cut.
I’m not thinking this pharmacy is going to make the cut.
Thursday, October 6, 2011
Sweet Sleep
Last night I heard you stirring at about 3am and started praying fiercely. Every night for at least a few weeks has found Daddy and me in your room suctioning, changing and cleaning. It wakes Liam up too and has left us all ill-rested and frustrated. Next thing I knew, I was waking up again at 5:30 to your brother needing to go potty and Daddy needing to go to work. Thank you Jesus. We all needed a good night’s rest. Let’s go for two in a row!
Tuesday, October 4, 2011
And the winner is...
Today I got a note from your teacher and nurse saying that thanks to the “boxtops for education” we turned in, yours was a winning class for the first 6-weeks contest! Your class prize was a big box of wipes and baby lotion. I don’t know why I think that is so cute, but I do! It makes me feel like you are such a big girl doing these SCHOOL type things! So now I’ve got the grandma’s collecting box-tops too. :-)
Saturday, October 1, 2011
Down on the Farm
We went to Dewberry Farms yesterday. The two of us aren’t really the outdoorsy type, but we troop through for the guys. This day, however, was absolutely gorgeous and there was a briskness to the air that made it more than tolerable for both of us.
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