Let's Get Clinical, Clinical

Friday brought our first trip to the Spina Bifida Clinic at Primary's. Although we had been warned about many things, it turned out to be a success and not nearly as traumatic as I expected.

Okay, be still my heart. Obviously feeding time is her favorite.

We arrived at 8:15 at the inpatient building for Abby to have her first bladder test done, the VCMG. To run the test, they inserted catheters into her bladder and her bum. They also placed sensors on her legs. All of these measured the various pressures and bladder behavior during the test. Her bladder was pumped full of water and then the monitors charted how her bladder reacted/contracted/released the liquid. Meanwhile, x-rays were taken of her bladder. Really impressive actually, what they could tell from these things. Her bladder emptied really well and nothing was going back up into the kidneys, so the beginning of the test was positive because of that discovery. She wasn't as calm as they would have liked so they weren't able to get a good read of the pressure in the bladder. It was a little higher than they would have liked to see, so they waited for her to settle down a little to get additional measurements. Ordinarily they like to see the pressure below 40 (units of some sort, I'm not sure). She stayed below that most of the time but jumped above it a couple of times. The nurse who ran the test said that because of that, we may need to put her on medication and start cathing her 4 times every day. She wanted to wait until after the ultrasound on her kidneys to make a decision with her colleagues. I felt fairly comfortable knowing that we may need to start cathing her. I know it would add a little more to her complications, but now that life has settled down a little bit, I feel better about it.

After the test, we ran over to the outpatient building to begin our clinic time. We were put in a room, to be visited by every doctor under the sun (well, it felt like that). I expected lots of time in-between visits, but there was a steady stream of people coming in. Our neurosurgeon was the first one to come in. He was pleased with how her shunt and incisions looked and how her soft spot felt. He ordered a fast MRI (meaning she won't have to be sedated) for us in 6-8 weeks to be sure the parts are still intact. Paula, the director of the clinic, came in several times throughout the morning. She was helpful and made sure we understood timelines, procedures, etc. A neurologist came in to be sure Abby is hitting those milestones - we're good there. A physical therapist came in and showed us an exercise to help her strengthen her neck and core. Her neck is already really strong and she spends a lot of time holding it up, staring straight at us. We liked his approach to using equipment in the future (wheelchairs, etc.). He said that around 2 years we can really start looking at that to see if it would help her. We're planning (tentatively) on her needing one for long distances and being able to walk with assistance the rest of the time. Obviously that is VERY subject to change, and he's in line with that mindset. He also said that he likes to focus efforts on helping her learn to compensate for muscle weakness by strengthening the working muscles, instead of trying to strengthen those that may not be able to be strengthened. Seems logical. An occupational therapist came in and echoed the physical therapist. A dietitian came in and said she's right where she needs to be (she's now in the 33rd percentile for weight at 10.45 pounds - weighed on Thursday). A urologist came in and said her test results from the morning were very good. He sounded more optimistic that we wouldn't need to cath her (Paula agreed with him), but still wanted to look at her ultrasound images. An orthopaedic surgeon came in to be sure we were going to Shriner's. A pediatrician came in to see if we had any questions. And thus ended our time in clinic. We were only there for about 2 hours - way better than I had expected! It was nice to be busy the whole time. It was also nice to hear that she's doing well with where she's expected to be, if not better. We will go back to clinic at the beginning of August and we'll have another bladder test done in 3 months. All is well.

A blood test was ordered, so we headed downstairs for a draw. We enjoyed walking down memory lane a little as we watched some of The Rescuers in the waiting room. Obviously, she did not enjoy the draw at all. She's a trooper.

Cuddles with daddy after a blood test are all you need. 

Around 12:40 we headed back to the inpatient building to get her renal ultrasound taken care of. She was nice and calm for this. We got back home around 1:30 and I was pooped. I crashed on the couch until Abby woke up. It still was not as bad as I had expected. We haven't heard back yet about cathing, something I take as a good sign. I assume that they would want us to know as soon as possible to avoid damage to her kidneys. We'll just see though, we're not ruling anything out just yet.

In other news, she's eating 4 ounces at least every 3 hours during the day. Usually more frequently during her awake time. She's more alert, spending 2-4 hours awake a couple of times each day. At the beginning of the night she sleeps about 5 hours before going to the 3 hour interval. She was a champion at her first day of the 3 hour church block on Sunday (definitely something we were happy about). She's figured out that she is the one making a toy on her mobile move when she hits it. It's the greatest thing to watch her explore and realize all sorts of things. She's finally figured out that diaper changing time means good things. As soon as the dirty diaper comes off, she's all smiles. Finally. Bath times are also a lot more pleasant than they used to be, thankfully. We sure do love her smiley face!

She loves to play!