Medical This 'n That

CHOC Rocks & Pop Rocks
Gracie's back at VitalStim! Yay! This wonderful news brought to you, not by my efforts battling insurance, but by the "powers that be" at CHOC and the (what I can only imagine to be) tireless efforts of the therapists in the Rehab department. As it turns out, many patients were having difficulty getting their insurance to cover the electrodes that are used as part of the therapy. (While the electric stimulation is part of the treatment, there are several modalities of treatment occurring at the same time - - all of that was covered, just not the electrodes themselves because the "stim" is considered experimental or investigational.) Several weeks ago (yes... so behind on updates!) I received a call from one of Gracie's therapists telling me that CHOC had made a decision (following the efforts of some of the therapists to find a solution) to cover the electrodes so that these patients can have access to the therapy. Problem solved - - CHOC Rocks!

A few weeks ago(er... several weeks ago), Gracie experienced Pop Rocks at VitalStim! How cool is that?! Never in a million years would I have thought that Miss Gracie would have that opportunity (I didn't even know they still made them, but even if I did know, I wouldn't have ever thought she could have them!)
When her therapist, Ally, placed a piece on her tongue, Gracie got a look on her face like, "What is that...? And, can I have more?!" Talk about a multi-sensory experience! I had a few, too, and was instantly transported to my childhood. Preston was with us, so he got to try a little taste, as well. Just like Gracie, he wanted more!

October Was A Rough Month... So I Made Some Changes
October proved to be a rocky month for Miss Gracie. I keep a daily log of her calorie and volume intake as well as notes regarding headaches, retching, etc. Not once during the month did she meet her full caloric goal and she had more "rough" days/nights than not. Not good. She saw her GI doctor on the 5th and she made some dosage changes in her meds in the hopes of helping her cope with feedings better. If anything, the exact opposite seemed to have occurred. (In fact, my fuller-faced girl - - as seen in her school picture - - has dropped over a pound since it was taken.) Because it appears that her feeding trends worsened with the dosage change, I have dropped the meds back down to the previous dosage to see if that is the culprit. Interestingly enough, it was also her "off" month of her inhaled antibiotic. Not convinced that has anything to do with this (it really shouldn't, in theory), but will certainly keep an eye on next month's patterns just in case.
She missed school the Monday after Halloween (even though her fever had been gone for 24 hours) because she was coughing so hard and requiring excessive suctioning.
Since I reduced her dosage (and since she's been back on her inhaled antibiotic), she has been having much better days. Time will tell as I continue the "experiment."
(Updated following the experiment... she's still much better than she was in October and she's off of the inhaled antibiotic again.)

Behavioral Pediatrician
We finally saw the behavioral pediatrician in October. Our main objective was to discuss the behaviors we have been calling "OCD" - - stripping her clothes off and refusing to wear any at home, repeatedly wanting lights turned on and off... no rhyme or reason (in our minds), wanting the TV on or off, wanting certain items removed from her sight line (again, in our minds, no rhyme or reason), always putting all of her clothes under the couch when she undresses... the list goes on and on. School hasn't reported any of these behaviors, but often when she comes home, she comes "unglued" and has many requests (demands!). After talking it out with the doctor (who totally passed the "coffee test," Hannah, she commented that it sounded much more sensory than obsessive. It was like getting smacked upside the head... I know to always consider sensory issues first, but somehow, had gotten wrapped up in the repetitive nature of the behavior that I forgot to consider the source of the behavior. Uh... DUH! Experts (David Brown) have been to our home, met Gracie multiple times and we have discussed these very issues on a smaller level. She's older now and the behaviors have evolved, but so has her level of input during the day. This all coincides with increased activity level (school every day... therapy several times a week, etc.), so it's no wonder that her coping mechanisms (behaviors) have changed. I shared the conversation with the doctor with Gracie's team at school and we made a plan for more proprioceptive input and a more varied and rich "sensory diet" than what she'd been getting. So far, so good. Although, she still won't wear clothes at home... even when it's freezing cold outside! She can still wiggle her way out of every contraption we've tried, so for now, we are letting it go. She has very little control in her life... so if this one thing (at home only!) makes her happy, then what's the harm?

Cardiology
Gracie saw the cardiologist on Veteran's Day. Since she's likely getting closer to needing her mitral valve replaced, he decided he wanted to get a better picture of what everything looks like - - measurements, pressures, etc. - - so he has scheduled a heart catheterization for January 19th. The other issue is that Gracie's pacemaker generator is using the battery far faster than anticipated at her replacement surgery in August 2008 - - and faster, again, than what was indicated at the last pacemaker interrogation. This is because she is completely dependent on it and, most likely, because scar tissue has continued to form around the external leads on her heart. Because she is so small, her pacemaker is in her lower left side rather than implanted in her heart. Thus, the leads (wires) that run from the pacemaker to her heart attach on the outside of her heart rather than the inside. This, by nature of the design, is less efficient than the pacemaker that is implanted directly in the heart. The catheterization will give a better picture of the tissue around those leads, as well.

We are nervous... it's "routine," but nothing is ever "routine" when it comes to your child. And, though we've experienced so many procedures and surgeries (including multiple open heart) with Gracie, this is her first time in the cath lab.