best Mother's Day gift. Ever.

Friday morning was Emma's vcug and the surgery worked! No sign of reflux on the x-rays at all! The beginning of the test was not great, with Emma remembering the last one and being very tense and upset, but once the catheter was in it was all coasting. We still have to get the official news from her urologist, but the results were obvious. I nearly burst into tears when the radiologist said it out loud. She will have a follow-up vcug in about a year just to be sure nothing has changed. We got home and happily poured out the rest of her antibiotics. It's over.

In other news, Ben's appointment last Monday was a good one and we were both very happy with his new opthamologist (we jumped through hoops to switch from one at Children's to another, and it was well worth it). The patching has made some improvement and he can now patch five days a week instead of seven. In three months we'll go back and check again.

I hope all of you moms out there had a wonderful day.

waiting for next week

On Monday Ben will have his first follow up appointment since we started eye-patching. I'm not sure if I ever talked about that here. This past fall, after not passing his routine eye screening at the pediatrician, we found out that he is extremely far-sighted. Added on to that, the two eyes have very different degrees of far-sightedness, which means that the better eye was doing all of the work, causing a lazy eye, although not the kind you can see from looking at him. They appear to work together, but his right eye was basically just hanging out. So he got glasses and two months later we started patching the good eye for 1-2 hours a day, to force the weaker eye to get to work.



On Friday Emma will have her VCUG to find out if the surgery worked for her left side. We are going back to the private radiology place where she had her first one done because the last one at Children's was much harder than the first. I'm feeling optimistic that it will be good news. Hopefully that won't jinx anything.



And a Lydia pic...just because. Oh...that knitted top she is wearing is the little Debbie Bliss dress I knitted for her while I was pregnant. She wore it her first Easter as a dress, a second spring/summer as a shorter dress and can now wear it as a little top.

one hurdle cleared, one to go

Yesterday was the ultrasound to check for blockage and everything looked good. We were able to see the mounds that they made on each side of her bladder and it was apparent what the surgeon meant when he said that the second one was "good, but not great." The one on the right side, from the first surgery, was shaped like a little half-circle, flat side down. The left one, from February's surgery, looked more like a round of dough. Sticking up, but more flat. But hopefully that will be good enough.

Her vcug, where we will find out if the surgery was successful, is scheduled for the morning of May 9th. For that we will return to the radiology place where she had her first one, because it went so much smoother there than the one at Children's in October. I have great expectations that we will get good news.

We had a little scare on Friday when she went to the health room at school, complaining of a headache. No fever at that time, but within two hours it was 102, so we had to go in to be sure it wasn't a breakthrough UTI. The good news is that it's strep (odd to say strep is good news). So now she's taking amoxicillan for ten days in addition to the suprex she has been taking since last spring. Man, I can't believe that, as of 3/15, this will have been going on for a year.

update

Copying and pasting from an email I sent out to family last night.

We're home from Children's. Emma's surgery was scheduled for 2:30 but
when we got there at 12:30 they rushed us through check-in because the
patient scheduled before her was rescheduled.

It took a little longer than last time and the surgeon said that the
site was totally flat and showed no sign of having the procedure done
before. He then said that he ended up having to use double the amount
he used in her September surgery and that it looked good, but not
great. Gah. Not exactly what we wanted to hear, but last time it
looked great right afterwards and didn't stick, so maybe good will be
good enough.

Emma came out of anesthesia really well--not as much confusion as last
time and is comfortable as of right now. We expect that tonight will
be uncomfortable, as last time, but hopefully not as bad since she
knows what to expect.

And, as of this morning, I am happy to say that she has had far less discomfort than last time. Yea! Now we begin the one month countdown until the ultrasound to be sure the deflux doesn't cause any blockage and then two months later for another VCUG to see if it was successful.

Oh, and you know what she chose from the gift shop?

love note

found on the mirror yesterday morning

surgery tomorrow.

Insomnia tonight, as expected. Last time Emma's surgery was in the morning but this time we've drawn the 2:30 slot. Luckily she can have clear fluids (and jello) up until 10:30 am, which is when we will leave the house and head to Children's. We should get there in time to make a quick trip to the gift shop, one of her favorite spots there (along with the cafeteria and the smoothie stand in the lobby).

Emma's teacher suggested that she might want to keep a journal and, because she loves to write, she is. The thing it has confirmed for me is how little she thinks about it all. The very first entry has a list of good things and bad things about the surgery, but beyond that, each day only mentions it in her countdown at the bottom. The rest is filled with talk about how much she loves her art class, how she isn't great at volleyball (which her class is doing in p.e. right now), but she thinks she's getting a little better, my friends coming over with their delicious babies (more about that in another post), and other regular stuff. The same things her journals have been filled with for years. It does my heart good to see that.

So by this time tomorrow we should be finished with reflux. Knock wood, crossed fingers, sending up prayers like you wouldn't believe.

Emma's current favorite picture

p.s. Thank you for the birthday wishes for Lydia...and, yes, she is still very much Fireball. Heaven help us, she is.

not the post I meant to write

I have been avoiding this blog, waiting for this to be over. Waiting to say, "It worked! We're done with this!" And then move on. This whole thing has just been too much. Then I think about others, dealing with so much more. Unimaginably more. And I feel pretty lame.
But.
I still haven't been able to completely shake this cloud. It has been lifting and I was feeling nearly normal. Monday morning I even felt optimistic. Gah. Here I am, making it all about me, and it's not.

Sometimes when I go outside and it's really cold I notice, after a while, that I am aching all over from clenching my muscles, trying to stay warm. The thing is, it takes a long time before I even realize I'm doing it. Then the muscle fatigue hits, all at once, and I'm exhausted. Completely and utterly exhausted.

Emma had her surgery in September and it went well that day. The surgeon was really pleased with how it went and after some initial pain at home that is normal with this type of surgery, she wasn't too uncomfortable. She moved gingerly for several days and then was back to normal. The thing with this surgery is that you don't know whether it worked until they do a follow up VCUG three months later.

Emma's follow-up VCUG was yesterday. The test itself sucked. Her last one wasn't great but it wasn't all that bad. This time the catheter hurt a lot going in and coming back out. Her face alternated between a grimace and eyes wide with fear. As I leaned over her face and whispered to her that it would be over soon and reminded her to blow, inside I was screaming and wanting to just grab her up and run the hell out of there.

Once the xrays started I watched the monitor and, to my eyes, the first side looked good. When they checked the second side I thought I saw something, but hoped I was wrong.

It's not all bad news. The side that was worst is all better. Perfect. The side that was not as bad is the same. Ever-so-slightly better, but not enough to be considered a lower grade. So we were given two options:

1. Do nothing and hope that she doesn't get sick. With any future fever we would have to take her in to have a culture to be sure she doesn't have a urinary tract infection. The problem with this option is that we saw from this past spring that her first and only uti resulted in kidney damage.

2. Repeat the surgery. The surgeon feels confident that the mound they created at her left ureter simply shifted and that it's very likely to be successful this time.

We're going with option 2, because I would go out of my mind just hoping that she never gets another uti in her life.

Emma actually seems to be taking it in stride. I need to take my cues from her. Because I'm still clenching and aching.

p.s. for all the times I've felt suspect of clowns, I apologize. To the Big Apple Circus clowns who made my baby laugh during part of the long wait at Children's hospital, you rock. She's impossibly shy and turned her face into my sweater so that you couldn't see, but she loved it. Thank you.