Family

Therapy, School, Feelings

We had our annual ARD for Joseph and John to discuss their school and therapy needs. Joseph’s therapy needs We will be continuing speech therapy at school one time a week. We will continue working on the letters S/SH, J, & K. I feel there is another letter, but honestly, I am drawing a blank … Read moreTherapy, School, Feelings

Doctors and more

We had some appointments over the past few days with different doctors. Here is a summary of our visits. Over the past few years, I have connected with other parents whose children have Catel-Manzke syndrome. Some of the questions were based on issues with their children. There is a soon to be 24yr old, 14yr … Read moreDoctors and more

Catel-Manzke Syndrome: Our Journey

The road to adding John to our family was a long and difficult one. Thomas and I actually just decided to start trying right before Joseph turned 2 yrs old. Right as we decided is when we learned we were having our first of several miscarriages. We finally learned we would be welcoming a healthy child … Read moreCatel-Manzke Syndrome: Our Journey

Hurricane Harvey

Some of you may know, I have recently started helping admin a group that is globally known. It is Mom of Trach Babies. This is a support group for parents of trached children. I have been apart of this group for quite some time. However, recently I became apart of the admin team. Since I … Read moreHurricane Harvey

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?

May 18th – Continued Prayers

John’s weight dipped lower again, but he is on continuous feeds at night and will remain so when he gets home. His last breathing treatment was at 6a with no need for another one so far. His breathing sounds much better. He is continuing to receive steroid treatments & antibiotics. He’s been eating fairly well, but whatever is leftover … Read moreMay 18th – Continued Prayers

May 16th – Respiratory Infection

John gained a small amount of weight, but feedings have resumed so we expect to see better numbers over the next few days. His RVP results came back and he tested positive for human metapneumovirus & rhinovirus. Both are similar to the common cold, but are dangerous for infants if untreated. He’s had a few breathing … Read moreMay 16th – Respiratory Infection