Monday, January 5, 2009

Happy New Year! (Cough)

If there is one thing that the holidays provide in our household, it's adventure. While Christmas itself came and went without much fanfare and excitement, the week after was pure crazytown. Jonah contracted RSV and is just now starting to get over it. He has been vomiting off an on for a week or so, with today being his first vomit-free day (although technically it's 11:30pm - there's still time)...... The coughing and sickness made its way around to everyone else eventually, including Mira, who is now battling lots of phlegm and periodic coughing fits. Needless to say, we are all pretty wiped out from all of the fevers, sneezing, coughing, gagging, breathing treatments, and of course, non-stop laundry from cleaning up puke. Delicious.

One of Mira's big gifts this Christmas was a piano/keyboard, which has light up keys. She has always been fond of her globe toy (which has seen better days) but we figured we could get her something to bang on that offers a little more visual and musical excitement. She wasn't too enthusiastic about if on Christmas Day, but we are hoping she will warm up to it.


One of the highlights of the holiday season (prior to the RSV onslaught) was getting a surprise visit from Auntie Aura, Uncle Ware, Addy and Truman! Friday evening I answered a knock at the door and to my surprise, Addy was standing on our porch yelling 'Merry Christmas'! It took a few seconds for it to register as to why and how my nephew from Illinois was standing there, but eventually it sunk in. We did get to enjoy a few days hanging out between Christmas and New Year's with the whole gang.


As far as medications go, we had Mira on an increased dosage of Lyrica for over two weeks and it did not go well. The increase really knocked her out. She started sleeping a ton - most of it during the day. When she was up, she was pretty irritable. She has been really cranky over the past few days in particular, probably from all of the congestion and phlegm. her first experience with Lyrica was pretty dramatic in halting her seizures (within a few days), but the increase this time didn't help at all. We didn't see any difference in seizure activity over the past few weeks. Lots of head drops and myoclonics throughout the day.

Sarah and I were having a conversation about Mira and seizures and I think we've come to some harsh realities in this journey with her. I think 18 months ago, I would have thought that there is a 50% chance that something would stop them. Now, I can't help but think that the likelihood of ever gaining seizure control with her is close to zero. We have exhausted all of our options with medications and are frankly just plain exhausted with it all sometimes. It's the days when she is screaming her head off and you can't figure out why or what to even do for her, that it all feels so helpless. We just continue to take it day by day. Sorry for the mildly depressing rant - it's late and I am sleep deprived. I will post new pictures soon.

4 comments:

Lisa said...

I just wanted to offer many hugs from our family to yours. Mira sounds so much like Kali. I always follow your blog closely. Kali does the same screaming and it is enough to make anyone cranky!
Some days I dont know how I will make it thru the day with all the screaming.

Lisa

Anonymous said...

Our daughter, Mira, also suffered from seizures. Please contact us via e-mail. We need to talk.
JOHNNYORF@SBCGLOBAL.NET

Anonymous said...

Here's some information you may find helpful or interesting on ClevelandClinic.org

http://my.clevelandclinic.org/epilepsy_center/pediatric_epilepsy/patient_stories/mira.aspx
(If clicking doesn't work, simply cut and paste the link into your Web browser.)

Shawn said...

Mira is such a beautiful girl!
Kiera, my daughter is much older than your Mira, but I can see a lot of similarities.
Hope to see you post more on the CDKL5 site.
Shawn