A couple of months ago after a lot of thought my husband and I had decided it was time to allow Sophie to attend pre-school. She has become increasingly frustrated being home so much and is wanting more interaction with children her age. We thought her health would improve significantly after her surgery in April, or we had hoped it would.
After Sophie’s surgery we have seen some improvement in her sinus infections but we also received the difficult diagnosis of PCD. Now that we know that Sophie has PCD is has helped unite the pieces of the puzzle of why she has been so sick. Now that we know we are living with PCD it also complicates her situation even more.
When we visited Dr. Nieves last month I told her I wanted to place Sophie in school and that I really needed to try to return to work. It was a very overwhelming visit with the doctor as the emotion of both sides were quite obvious. The doctors excitement of seeing Sophie and us again and our relief that she would be taking over Sophie’s medical care once again. That combined with a review of a years worth of medical history all in a forty-five minute visit was tough.
Last week we visited Dr. Nieves for Sophie’s follow-up and that’s when the doctor sat us down to talk to us about her recommendations for Sophie’s care and education. Deep down inside my husband and I suspected this would happen but we had hoped for better news.
The doctor spoke of the love she has for Sophie and that all she wants is to see her grow and learn and ultimately live. After I insisted that we give school a try for several months before we rule it out she asked us if we were willing to take the chance of losing her. The truth is it only takes the wrong bacteria getting into her body to destroy her immune system and lungs, they are not strong to begin with. She asked us if we would be able to live with that decision if the unthinkable were to happen. The doctor has been here from almost the beginning of our fight for Sophie’s life. My husband and I looked at each other and knew we could not take that chance.
We followed up with the immunologist who also confirmed that it is in Sophie’s best interest to remain at home where she is exposed to limited germs and bacteria. It was not the news I wanted to hear but this is our reality. As much as I wanted to place Sophie in school for her benefit I also think a part of me wanted a break too. Lately I have been so busy and overwhelmed with life that I feel I have not been dedicating Sophie the time she needs.
The only other option the doctor gave us was a preschool run by nurses where they have emergency medical support on staff. After a visit there my husband and I decided it was not a good fit for Sophie; she is too active and we felt it was be a step backwards.
I contacted the school board here in May before we returned to Florida and yet here I am still waiting for them. In the last week after the final decision on keeping Sophie on Medically Homebound I have been on a mission to get the ball rolling to have her IEP transferred over to FL and have her re-tested because the state is requesting it. It’s truly amazing how many people have offered to help me and yet never return my calls. I’m not pleased with the PBC school system at all.
It’s time to get out my teaching hat, my wonderful Montessori guides from the wonderful classes I took and graduated through KHT Monterssori instructed by Karen H. Tyler. She was awesome and thanks to her I will have the tools to teach my precious girl and keep her safe.
This won’t stop us it may make my life a little more complicated but I can do this. Craziness is my normal.