Friday, April 19, 2013

Speech, Boston

On Wednesday, it was a horrific day. We got a call first thing in the morning telling us that somehow someway the test for Cornelia De Lange did not get run and we need to draw blood, again. So I (naively) stated I would do it after Ellie's speech appmnt at 10:40. The car had nearly no gas (thanks hun). We hit a ton of traffic. We hit construction. The MOB parking deck was full so we had to park at the hospital. Ellie had taken her shoes off so I had to carry her as we ran to the appmnt. We ended up being only 2 minutes late, and the waiting room was filled with about 50 kids (no exaggeration). It was PACKED. Even the speech therapist said she had never seen it that busy since she's been working there. We get into speech therapy and Ellie starts talking like it's nothing- saying "more bubbles" and repeating pretty much anything the speech therapist would say ("C'mon. Bob! Up bill!"). Ellie even blew some bubbles, which meant she was properly closing her nasal passages and using her lips. It was all very exciting. Of course by the end of the appmnt Ellie stopped caring all together or talking or being helpful. She had woken at 6 and it was nearing noon so she was probably hungry and tired. I sallied forth to the hospital for her blood draw. I fed her snacks during registration and let her look at the fish tank, pet the therapy dogs, say hi to the Braves mascot. I realized she needed a diaper change. After we signed in to the lab I changed her diaper with the last diaper in the bag. We waited and waited and waited and waited. After 45 minutes, the tech comes out and says it will be just a bit longer because she needed to coordinate with their outside services person. Then she asks for my insurance card. I'm like whatever, let's do this. I'm so stressed and tired and hungry and irritated. Then she comes back and says, "You realize this is a $6,000 test?" I say, "Okay? So? It's not an optional test. We have to have this done." She says, "Well I don't know if it's covered or if you have a deductible or whatever." I said, "We already met our deductible." She says something to the effect of, "okay I'll be back." After AN HOUR we get called back. AN HOUR. By this time its nearly 1:30, my daughter hasn't eaten or slept in hours. I'm livid. Ellie pooped AGAIN and I had no diapers. She's not acting out, thank goodness. I am about to. I fed her all the snacks I had, which weren't a lot. I knew she would fall asleep the minute we hit the road, and she did. I had other errands to run but the day was shot. We weren't home until almost 3. I bathed her, changed her clothes, and tried to get her to take more than a 10 minute car nap but it wasn't working out. I fell asleep by 9. Awful, horrible, day. However, we don't live in Boston. There were no bombings at our marathons. No killing of cops, no carjacking terrorists, no robbing by terrorists, no throwing of explosive devices and hand grenades out the window of a stolen car, no police shoot-outs, our neighborhood was not on lock-down while searching for Chechen terrorists.

Thursday, April 11, 2013

Xrays, genetics

The skeletal x-ray was a nightmare. I didn't fully understand what was going to happen until we were in radiology. They take several x-rays of her body from head to toe. It takes 30 minutes. I knew Ellie wouldn't hold still for 3 seconds, let alone 30 minutes. They had to have several people try and hold her down. She became so upset she threw up, multiple times. The bone age test was just an xray of her hand, which I already knew. Genetics called with the results from the x-ray and the thyroid results from the blood draw we had to do (which cost us $950, thank you United Healthcare). The bone age test was fine, the bones showed no indication of Stickler's or other problems. Her thyroid is normal. So now why is she small? Does this mean feeding tube?