another sample??

Yesterday the phone rang and it was someone from Dr. Shoffner's office. Let me recreate the conversation.
me: "Hello?"
her: "Mrs. Claffey? This is so and so from Horizon Diagnostics (Dr. Shoffner's lab). Your daughter had a muscle biopsy last week."
me: "Yes..."
her: "The lab in Boston rejected the sample, so we'll need to get a new sample."
me: "WHAAAAAT???"
panic panic panic.
Fortunately, when my heart resumed beating and pumped oxygen back to my brain and my ears worked again, I was able to hear that they only need a blood sample. Fortunately, we are already driving into Atlanta next week for our regular appointment with the neurologist. We'll just leave earlier to stop by Shoffner's office to give the sample. Can you imagine if they needed to take more muscle???
Actually, maybe that's the technique they use to ask for more blood - let you think for half a second that they need more muscle, so when they actually ask for blood you are so grateful that you are willing to give away her blood AND yours.

Elmo's birthday

A few nights ago, Jim was reading a book to Eve that had a birthday cake in it. Unprompted, Eve started blowing as if blowing out the candles. So we decided to have a party and let her blow out some candles for real. Who's birthday was it? Elmo's. Last night, we had a birthday cake, candles and a present. We bought a book for Elmo that Eve can read to him. Well, we can help her read it to him. The whole thing was pretty funny. Who says you can't just make up your own celebrations?




Today, the last of the steri strips came off the incision. Here's what it looks like.


Here's a picture from the other night that highlights Eve's new haircut.


It was actually pretty cold this morning (19, I think). But Eve and I went to Target anyhow (no daycare today for MLK day) . On the way Eve took a poo. Great. Oh, well, I'll just quickly change her in the backseat before going in (it would be too much of a hassle to do it inside because I don't know where I would have put the shopping cart cover while I was in the bathroom). So, I spread out a towel and grabbed the wipes and.....the wipes were frozen solid!!!! Are you kidding?? Shows you that it doesn't get cold that often down here because I haven't run into this problem yet. I've been keeping the hit and run bag in the car. Fortunately, I had a few plain paper towels that worked just fine. What a morning.

bandage is off

We took the bandage off last night and Eve's incision looks great (if you click on the pics to enlarge them, you can see that the incision is a zig zag. I wonder if that helps it heal nicely.). I took her to Dr Setia this morning to have him look at it (per the surgeon's request) and he poked and prodded and pronounced it fantastic. We're supposed to let the steristrips fall off on their own. We stopped for a quick haircut on the way home. She was very good for both Dr. and salon.

Adding to the list of Dr's, Eve is getting an appointment to see an Opthamologist and an Audiologist. Let me explain. I had a meeting with someone from the School System the other day. When Eve turns 3 this summer, she is no longer eligible for Babies Can't Wait. The school will take over her care. So, when school starts in August (7th!!!!! Can you believe it???), Eve will go to the special needs preschool class 4 mornings a week. They have therapists that will work with her. Anyhow, the school system needs a hearing and vision test done to start processing her. The pediatrician's office can't do it on someone so young, so he is sending her out. But, Dr. Setia said he likes to have his developmentally delayed kids tested for hearing and vision anyway, to be sure to maximize their sensory experience. Because we have the Katie Beckett waiver, I automatically agreed. I have no doubt that her vision and hearing is perfect, but it will be great to have a documented baseline. But, my black book of doctors is getting quite large.

Here are Eve and Baby taking a ride on the bike.

still recovering

It's been a tough couple of days for Eve. She really made Grammie and PaPa work hard when they were here. And she rewarded them by throwing up in their truck. And then she threw up the next morning, too. I think it was the Tylenol with codeine that did it (mixed in with some car sickness). She is doing much better. She's been on Motrin since Friday afternoon and seems to be a bit less cranky. She also had a few car rides yesterday sans any vomiting.

The reason for some of the car rides yesterday is that Eve got another urinary track infection. She missed her daily antibiotic the day of the surgery, and she threw up a 1-2 hours after her Friday dose. Fortunately, her pediatrician (Dr. Setia) had office hours on Saturday morning. We took her in and filled him in on the week's events. I told him that she had been catheterized during surgery, but thought that shouldn't cause an infections (right???). He said that if you or I were catheterized and bacteria was introduced, 8 times out of 10 we would flush it out with the urine. But he suspects that Eve is unable to fully empty her bladder and thus wouldn't be able to flush out the bacteria. He also thinks that missing one dose of the antibiotic wouldn't result in a UTI, and more likely that antibiotic isn't working. So.....he sent us to the hospital to have a urine analysis by catheter. Because she isn't potty trained, they had to use a cath. Poor poor kid. After much crying, she survived. Dr. Setia gave us a Rx for a different antibiotic and told us to start her on it. He will call when he gets the results of the urinalysis. Fortunately, I will see him on Thursday anyway for her scheduled appt to have him look at her incision.

So, it's been a crazy kind of week. Eve goes back to school tomorrow and I definitely think she is up for it.

Round 2

Well, another long day. This one began at 5:30 am when we left for Atlanta. The car ride was uneventful, until we pulled in the parking lot and Eve threw up. I was totally freaking out. If she was sick, they wouldn't do the surgery because of the risks of her throwing up while under anesthesia. But, she seemed totally fine after that and we basically chalked it up to car sickness. The staff watched her closely and she was happy and playing and it was an isolated incident, so all went forward as planned. Eve was really good while waiting for the procedure. She even happily got dressed in her hospital gown.


We talked with the anesthesia doc and the surgeon. Both explained what would happen. She cried when they took her away from us. Fortunately, they were going to give her some nitrous to calm her down while inserting the IV (I'm not sure if I've told you how she is a very 'hard stick' when it comes to drawing blood). The whole procedure took an hour and then they brought her to recovery for 30 minutes before calling us back. When she saw us, Eve started crying. Fortunately, they let us hold her and she settled right down - though she was totally out of it.


Jim was out of it, too.


After about 2 hours of observation, Eve was smiling and when offered crackers, she sat like Buddha and happily munched away.


She got many compliments from the post-op nursing staff about how cute she is. They sent us off after giving Eve a dose of pain meds (the local anesthetic would have worn off by the time we got to Athens and got the Rx filled). It knocked her right out and she slept the whole way home.

She gets the pain meds every 6 hours for 48 hours. We are even to wake her up in the middle of the night to give them to her. Apparently, if the pain gets ahead of her, it's difficult to manage it. Also, sponge bathes until Friday night.

The bandage stays on until next week. There are steri strips underneath that we are to let fall off on their own. Also, I think there are dissolving stitches. We are also to go to her pediatrician next week to have him look at the incision. I have an appt for Thursday morning. Grammie, Papa, and Kirby arrived safely in time to help put Eve to bed. They are going to be life savers. Because the semester started this week for me, things have been busy. I received over 25 work emails while I was gone today alone. oh boy. Anyhow, I just wanted to let you know how it went today. Eve is a trooper and we are very proud of her!

Round 1

For the most part, today was a good day. Not as trying as we thought it would be. We got to all of our destinations with out any problems (traffic or navigation). First we went for the metabolic testing. Let's see....this was not Eve's favorite. They put this drape with a plastic bubble over her head and hooked up an oxygen tube to it. She was to sit calmly in this for 15-20 minutes. Yeah....not so much. Fortunately, the plastic bubble dampened the screams. The poor kid got so worked up in this little greenhouse that she got totally sweaty and fogged it up. She survived that and then they hooked up an EKG to her. Again, not so happy. But, she managed to calm down for this since she wasn't being pinned down. Jim was able to distract her with pictures on the camera. Speaking of pictures, here are some shots so you can see what was involved. Is it bad that Jim and I are laughing?







Then we went to Dr. Shoffner's. Very interesting experience. He is soooo calm. He told us that he had reviewed Eve's records and spoken with Dr. Krewiecki and has been thinking about Eve. He sat us down and summarized what he knew about Eve and her situation to make sure he was on the same page. He said that the genetic testing that has already been done, was the very most basic. He said that testing was like looking at the earth from Skylab and being able to tell if Georgia was missing. But, you wouldn't be able to tell if a town or neighborhood was missing. His testing will be much more specific. He isn't ready to say that Eve is regressing (but isn't ruling it out). He said that if she were truly regressing, you'd probably see something on the second MRI. More importantly, you would also see comparable regression in her cognitive functioning, which is not the case. He said there are many possibilities for what is causing Eve's delay - many problems have the same presentation. I asked him if he thought we were doing the right thing by having this testing done - i.e., is this the next step? He told me what he noticed about Eve that is of concern and is unusual. When he stroked the bottom of her foot, instead of curling down, her toes curled up. Not only did they curl up, but they sort of pulsed that movement. So, instead jerking her foot back because it tickled, he fanned her toes up several times. Also, he watched her walking and said that her gait is not as fluid as it should be. She does step, but it is very jerky. He said there are definite issues with her lower extremities. Specifically, she appears to lock her knees to support her weight and stand. He asked us about her muscle tone (and we explained that she is both floppy and stiff). He is very scientific about his explanations and approach. So much so, that I forgot he was a Doctor and was surprised when he got out the stethoscope and the light to examine her eyes.

Tomorrow they will be taking blood, urine, muscle tissue, skin (from the side of the incision), and spinal fluid. It will take 8-12 weeks for results. He will send us the report that he sends to Dr. K, but said it will not be just test results, but explanation and interpretation as well. I am encouraged that he did not automatically think she was regressing and had a degenerative disease. Tomorrow will be a long day. Wish us luck.

getting ready

Well, this week is going to be busy. I start the new semester tomorrow, and we also have our next round of Dr appointments. First, Eve has a Resting Metabolic Rate test on Tuesday morning. She can't eat or drink anything (other than water) that morning and then they hook her up to an EKG and monitor her breathing/oxygen. This will tell them her minimum caloric requirements for resting. Then we have the appointment with Dr. Shoffner. The next day is the biopsy. It'll will be done under general anesthesia and it will be a very long day. Eve will have an incision of up to 2 inches on the middle of her thigh. They recommend that she does not go to daycare the next day because she will be "out of sorts." Fortunately, Jim's parents are coming out to help out. This way I can go to work and if she's really out of sorts, there will be lots of hands to keep her occupied and distracted.