Sunday, March 25, 2012

Another round of follow-up done!

After a full day Wednesday, and one appointment on Thursday, we're done with another set of follow-up appointments, and everything came back great!

On Wednesday, we were at the hospital from 7:30 until 4. She had an MRI, saw Neurosurgery, Oncology, Neuropsychology and Ophthalmology.

The MRI went well. The anesthesiologist couldn't stop saying how impressed she was with how well Summer handles the whole process of going under. She actually looks forward to it now and gets excited when we tell her she has a "strawberry air" day.

Coming out of anesthesia is a completely different story. Sometimes she wakes up just fine, but usually (like on Wednesday) it puts her in a very foul and testy mood for a couple of hours.

The MRI came back stable for both the solid portion and the cyst, so that was great to hear! Nothing new to report from the Neurosurgery or Oncology appointments.

We met with the Neuropsychologist for a meet-and-greet, just to touch base and decide what sort of evaluations we should have done. Summer had a thorough neuropsych evaluation in Boston, and they recommended annual evaluations, so we'll have another one with the neuropsych team here soon. I also asked them about ADHD testing, and I think we'll do that too. It's my understanding that ADHD is a pretty common problem for kids with this tumor and Summer definitely has some of those symptoms, so we'll have to see where that leads.

Luckily, we had a little break after those three appointments. We went over to U-Village for lunch and let Summer unwind on the play area a little before Ophthalmology. It definitely helped her mood, and the Ophthalmology went well.

It was a very long day, but I love having nothing new to report from those appointments!

On Thursday, we saw Endocrinology and talked through how everything's going with growth hormone. Summer has grown an inch and a half since December (!!!), and she now weighs 29.5 lbs. The growth hormone seems to be working really well, so they don't plan to change the dose any time soon. It's amazing how much of a difference it has made in her body composition in such a short time. Just looking back at her Santa pictures, you can tell a difference in her face and her arms. She's just a lot leaner now.

The shots themselves are going really well. It's not a battle every night any more, which I am so thankful for. She still doesn't want to do it, but she doesn't put up a fight.

Summer has been asking about her tumor more often, and we do our best to explain it to her in three-year-old terms, but it's difficult! I'm sure she doesn't quite understand yet, but she'll get there. The other day she said to me "Mom, my brain tumor hurts." It was so strange to hear those words coming out of her mouth! Thankfully it was right after her MRI, or I would probably have been more worried. After a little more probing, I figured out she was just fishing for a band-aid. Funny kid!

Here's a video of her dance recital from Friday night. She's on the end of the back row, on the right side.

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