Thursday, January 31, 2013

Get Born

My January calendar has been staring me down, a reminder that life is sailing along and I need to stop and reflect for a moment. I do realize some of you count on this blog to follow my girls so my apologies for abandoning it on a regular basis. Here is a bit about what’s been happening lately on Podtburg Circle…

I am excited for 2013, it’s been awhile! Our first year to kick off with a diagnosis for Ava and so far it has helped tremendously. We have targeted drugs to treat her epilepsy in light of available (albeit limited) research, we are in the beginning phases of making these changes and it’s the first time I don’t feel like we are shooting from the hip. It could be an illusion of mine, time will tell.
She will be having an urodynamic study in mid-March to see how things are working with her bowels in regards to neurology; the results of that test will help us better understand the probability of potty training success. Ava is good at having BM’s on the potty but not so much with urine. If we’re going to live with incontinence, I’ll take urine.
I can’t say enough about how lovely the Rett Clinic has been at obtaining a comprehensive picture of Ava that supports medical, therapeutic, and educational professionals that are part of Team Ava, relieving me of the marketing of Ava to the team. Even better, the Children’s Hospital Colorado Rett Clinic will be the very First CDKL5 Center for Excellence.
That’s right, how lucky are we to have THIS in our backyard?? It’s exciting and I’m sure you will continue to see me tooting the RTT clinic horn! Also, ALL of my CDKL5 fundraising will now stay locally to support the new clinic where the IFCR has partnered with the RMRA & CHC to advance research, treatments and a cure for those affected by RTT disorders.
I have also been working the Northern Colorado Strides for Epilepsy committee again this year; we are excited to move the 5K to the CSU campus this year. Look for more details on TEAM CDKL5 (formerly Ava’s Troops) in the near future. The race date is Saturday, May 11 and we would be honored to see you there.
The committee is also hosting a 24-team softball tournament in Windsor the last weekend in April; we might have gotten a bit crazy this year biting off all this work now that we are in the thick of chewing on it. What can I say, once an epilepsy warrior, always.
In general, we are all doing well. Aliza is too smart for her own good and Ava continues to remind us what a tease/jokester she is. They continue to blossom, entertain, test my patience and inspire me to be a better human. I do post many adventures on Facebook, probably why this blog is so lame these days. I hope to get back to reporting the little things here too.
I am also looking forward to my first trip to NYC in March. I am attending the FirstAnnual International CDKL5 Yummy Mummy Weekend  with a group of CDKL5 moms from around the world. My lifelong girlfriend Tricia will be my sidekick. We will not only be flying our CDKL5 awareness flags, but also raising awareness for Rare Disease research in general in light of the 30th anniversary of NORD and the Orphan Drug Act. Stay tuned…more to come!
I find myself tuning into my inner Bob Dylan’s Subterranean Homesick Blues; a great beat to rebound to!
Ah get born, keep warm
Short pants, romance, learn to dance
Get dressed, get blessed
Try to be a success.”


Deana said...

Looks like a lot of good stuff happening! A lot to look forward to in 2013!

Summer said...

Thanks for the update! It's always great to hear from you!! Give the Girls hugs from me and cousin Lanah!! Love you guys!