Journal
No news is (mostly) good news
March 6, 2013 8:58pm
This is definitely the longest I've gone without updating, but fortunately, no news really is pretty good news in Ava's world. There are always issues, of course, but all in all, I must say that 2012 was a very, very good year for our little bunny. The best part?
Ava's Broviac was placed last year on March 1. Minus the GI virus that landed her inpatient less than two weeks later, she has not been in the hospital, or even the ER, in a FULL YEAR. This is absolutely AMAZING!
So many things have changed for the better since she began receiving a liter of IV fluids every night. She's been able to make it through full days and full WEEKS of school, where she's excelling academically. She joined a Brownie troop with her friends from school and is having a blast. She's healthier and more stable than she's been in a very long time. Having a central line poses so many risks, but the benefits we've seen and the positive changes it has brought to Ava's life have made it worth the worry. So far, knocking on wood!, no infections, no problems with the line, no problems with her skin!
Like I said, we're never without issues, but most have definitely been under much better control. She's still dizzy a good portion of the time, even with two meds and plenty of fluids. As far as new issues go, we dropped off labs today for endocrinology, one of the only specialties we weren't seeing. Based on some signs of early puberty, metabolism ordered a bone age xray of her wrist, which showed that it's slightly advanced. So, checking hormone levels to see what's going on and crossing my fingers that it's "nothing" and we can just cross this one off the list.
With a few meds and the increase in fluids, the frequent migraine headaches Ava was having last year have been really well controlled. However, in early January she told us that she "sees colors" all the time. I've dealt with severe migraine all my life and there's a strong family history on my side, so my immediate thought was aura. We finally saw our (amazing and very mito-savvy) neurologist today and our nurse and I were both really impressed by how well he was able to ask questions in such a way that Ava could a) understand, b) answer, and c) really convey what she's seeing. Actually, the way he phrased his questions made me realize that she sees exactly what I see and I had just never been asked in a way that would make me realize that not everyone sees wavy technicolor lines and pinprick strobe-light flashes on a regular basis. Oops.
She was playing with a draw/paint app on my phone and I suggested that she try to draw the colors for him, which worked out really well. So, his diagnosis was migraine aura, like I had originally suspected. It's scintillating scotoma, to be exact. This is happening pretty much all the time, according to Ava, but she denies having any actual headache pain. Abdominal migraine has been thrown around since she was three and he said that those with mitochondrial disease are more prone to have migraine, as well. His theory here is that she's on quite a few meds that act as migraine blockers and they are keeping the actual headache at bay and it's only manifesting as the aura. Again, this happens to me without the headache, but I had really never put it all together. Very interesting! Because she's already taking midodrine, metoprolol, periactin, and celexa, we're not planning to change anything in terms of medication right now. The only problem here is a drug interaction between azithromycin, essentially her only option for a GI motility med, and celexa, which has drastically improved her mood, overall hypersensitivity, and daily pain level. So, between a rock and a hard place there, because she most definitely needs both. We'll continue to try to work on this one with our ped, neurology, GI, and the pain clinic at Children's.
Overall, things are good in Ava's world. She's excited for spring and to be able to be outside, which is so awesome to hear. We really love having her feeling so much better and showing interest in things again. I can't believe she'll be eight in a few months. Where has the time gone??? Hopefully I'll update again before then, lol.
I have so many friends who have lost children over the last few years and I am so thankful every day that Ava is as healthy as she is. Don't ever take good health for granted, because I've seen how things can change in an instant. Dave and I are so proud of Ava and how resilient she is and I can only hope that this newfound stability lasts and lasts.
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