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 more

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 more

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 more

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 more

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 more

Our 2nd Home “Hotel McLane”

Big Thanks! Thanks everyone for the prayers, texts, calls, and messages over the past few days with John being in the hospital. It wasn’t anything we expected or even wanted obviously. He had been sick for most of the month of April. Antibiotics on April 4th, and then again on April 13th it just felt … Read more