Tuesday, November 20, 2012

Tidbits


How I wish it wasn't weeks before getting back to this old blog, how I wish…

What’s new on Podtburg Circle? It seems to be ever-changing, thankfully. We are gearing up for the holidays and a bit of winter fun. It’s also never too early to start work towards our 2013 Northern Colorado Epilepsy event or to find a bit of time to partake in a little CDKL5 advocacy work. Nursing and accounting still take top priority; luckily life leaves me little time for pity parties or other elements of the sort.

Ava is having a fantastic school year. I couldn't be more pleased with her general education teacher and her first grade peers. They love her as much as she loves them, candy to my mommy soul! Her backpack often contains classroom mail, an occasional present and lovely art work. We've been as far as Ft Collins and encountered little people dragging their moms our way, insisting that they meet Ava.

As always, her special education community at Pioneer Ridge is WONDERFUL…we couldn't ask for a better teacher or group of Para’s to help Ava find her way each day. Her center-based schoolmates are also lovely little people. Too bad 1st grade wasn't forever.

Ava also passed her sleep study in early October. We've always known she doesn't get any true REM sleep but we've never checked to see how her pulmonary system is working at night and the plausible issues it could have been adding to her lack of sleep. Thankfully she does not have any apnea, I’m quite sure a bi-pap would not have been a nice addition to our already restless nights. I’m also not giving up benzodiazepines for potential improvement of stage-2 nREM sleep :/  She will be visiting with an urologist in early January to explore the possibility of a neurogenic bladder. I think that is one of the last specialties we are seeing as a follow up from our June visit to the Rett Clinic.

Aliza Mae is blossoming as well. Mom took her on a weekend trip back to Nebraska to work cattle in October; luckily they both came home intact. Aliza now has a better understanding of where hamburger comes from and also decided that she wasn't scared of anything…EXCEPT 4-wheelers. She thinks Nebraska is alright.

This year Aliza asked to start dance class, she decided this was better than horseback riding might be so we found a Ballet/Jazz/Tap class here in Johnstown. Her tutu, leotard, and tights are quite cute. She is also fairly sure she is moving from skis to a snowboard this season. I am ever gracious for her ability to keep one of my legs in the typical pool of kid life. She hums along from dusk til dawn and if nothing else, it’s good for my jean size.

That's the skinny of recent Podtburg Circle tidbits  I am grateful for another year of memories to cherish. If I am lucky, perhaps I will get to a gratitude post in the next few days. Be safe & kind this holiday.

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