Wednesday, August 6, 2014

Muriel at her fountain

July 14, 2014

You've come a long way, Baby!

This is the fountain the nurses were so kind to let Muriel visit after being stuck in the hospital for 3 weeks without being outside. She had a touch of ICU psychosis and was feeling terrible. 
September 2013: 

We have had a fun filled summer! Muriel went on her first sail, visited Disney, and "graduated" from physical therapy! Muriel has been strong and making great gains in her speech as well. She continues to say more words each day. Today's word of the day was napkin! 



Saturday, June 21, 2014

Balancing act

Muriel has been attending Katie Bug Therapy here in Naperville for several months. She sees her speech and language pathologist once a week and physical therapist once a week, and occupational therapist every other week. She loves Ms. Marie, Stephanie, Teena, and Kayla! Here she is at PT.

Saturday, December 14, 2013

Early Intervention

Early Intervention is a state funded program designed to identify children with developmental delays between the ages of birth-3 years. The goal being putting interventions in place before preschool. Muriel had been assessed by them around 7 months and presented a >30% delay in gross motor skills. She received physical therapy for 3 months and at her reevaluatuon she had made great gains and did not qualify. That was last February.
The EI team consisting of a speech pathologist, physical therapist, developmental therapist, and her case manager visited the house on Thursday. They spent 2 hours evaluating her and determined she again has around a 30% delay in gross motor and a 45% (yikes) delay in expressive language. In the area of receptive language she was not presenting delay, nor did she show a cognitive delay! We plan on weekly speech and bimonthly PT as soon as the paperwork goes through.

Tuesday, December 3, 2013

Insurance vent

Just got off the phone with Aetna. YES, it is 1:59am, YES I have been speaking with them forEVER. In addition to the conversation about the Tracleer medication earlier today, which lasted approximately an hour.
Currently, there is some sort of major disconnect. I am *so* frustrated as to why the Sildenafil medication was filled last month without issue and cannot be done this month. Aetna blames Walgreens for charging too much (over $1,000) and Walgreens says Aetna won't take their override codes...BTW, pretty sure it was in fact the same cost last time it was filled. Bottom line: IT WORKED LAST MONTH---FIGURE IT OUT!!! I told the Aetna rep that we'd be checking into the ICU for nitric oxide in the morning if they wouldn't approve her sildenafil NOW since the Walgreens only compounds at night (and that is how her Rx is written). Finally it was approved for a 15 day supply and I'll be going through all this again in 15 days. Craziness.

I really needed an outlet for that rant and I'm sorry for being so negative.