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
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!
It seems that I ask so many times for all of y’all to pray for us for something that we are going through. However, this time I want to turn it around and ask “What do YOU need prayers for?” There are so many things going on in this world that sometimes we don’t stop … Read moreI want to pray for you
Life has been a bit busy. Sorry for the lack of updates. Thomas was admitted into the hospital on 9/20/16 to 9/27/16. He was admitted due to having a problem breathing. After some x-rays, CT scans, and low oxygen levels he was admitted for the doctors to try to find out what was wrong with … Read moreSo busy
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
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
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!
On Tuesday we traveled to Kileen, Texas to get John’s new SMOs (Supra Malleolar Orthosis). These braces will force John’s ankles to go back straight vs inwards and his feet to go straight vs outwards. John is required to wear them 8 hours a day. He is allowed to wear them while napping and take … Read moreSMOs & New Word
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
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?