The long overdue blog post

Wow..I didn’t realize the last time I posted was in December (before Christmas). I have posted Facebook Live Videos on Facebook but I guess I kinda slacked on the blog. I apologize it has been sometime. So updates on the Miller Family: Thomas is still working at KWTX and has become a block captain for … Read moreThe long overdue blog post

2016 is a Wrap!

I happened to be on the phone earlier trying to tie up some loose ends with insurance and such. I was asked some questions and was actually surprised with the answers because honestly it did not feel like that much. This year alone for John: 216 Therapy appointments 59 Dr appointments 10 Procedures/Surgeries 4 Emergency … Read more2016 is a Wrap!

Another family

I was recently reached out by two other mothers that have found my blog while they were searching about Catel-Manzke Syndrome. One has a four year old little girl and was diagnosed this summer, and another has a little boy who hasn’t been confirmed yet. I’ll admit I’m relieved that I actually have other families I … Read moreAnother family

Sleep Study Results

  Joseph started 1st grade this year. He was all excited to go. It seemed like he was trying to tell Thomas, John, & I all to leave the room as soon as we walked in. His most exciting thing from the first day was in Science class was they mixed Lemon soda with pixie … Read moreSleep Study Results

Doctors, Sleep Study & a 6yr old!

August 1st John met with the Trach vent clinic team, which consists of his ENT, pulmonary, trach specialist, speech, & dietitian. ENT Dr. Powitzky was pleased with John. He said everything looked great with his tubes, trach site, the tonsil and adenoid removal. He wants to follow up with John in 3 months unless something … Read moreDoctors, Sleep Study & a 6yr old!

Developmental Levels & Traveling

This is a very over due post. I have just had a very crazy past month with doctor appointments and traveling for a funeral. First up is John’s results from ECI on where he is developmentally. Adaptive average is 16 months with a 40% delay. That breaks down to self care he is at a … Read moreDevelopmental Levels & Traveling

Special Need Mothers do nothing?

Quick update on surgeries. Everyone did fine. Alexander & Joseph did wonderful with their ear tubes. John did well and Dr. Powitzky did above and beyond helping get John into the Operating Room. Now onto another subject that I need to address. So apparently it has been brought to my attention that Special Need Mothers “never … Read moreSpecial Need Mothers do nothing?