Sometimes I get a reality check even though I really don’t want it.
This past week we took Sophie for her six month follow-up with the Geneticist and Neurologist at Miami Children’s Hospital, while the geneticist has been following her since she was about six months old the neurologists seem to change very frequently. I live a little over an hour away from the hospital these visits can be bit stressful so I made my husband go with me. Having to sit that long in a car seat is a very big challenge for Sophie and now the baby who wants only to be held ALL the time cries alot and you throw in the fact that I always get lost I would most likely lose my mind before the day is up. This time though Sophie did great I took her Ipad and played “The Wiggles and Kidsongs” the whole drive there, the baby on the other hand he is just so dramatic! We used the GPS and did not get lost we even arrived on time so I was not really stressed when we arrived, I walked in like ok let’s get everything updated and were outa here.
I was prepared to discuss the new issues we are having with Sophie with my list in hand and the script from her pediatrician who requested an ASD (Autistic Spectrum Disorder) evaluation. So I gave all the medical updates to the student who updates the files before the doctors join us and Sophie started to become frustrated, it’s not easy for her to be in an unfamiliar place with unfamiliar people not able to roam the floor and release all her built up energy. So slowly it started escalating to biting mommy, hitting her head in frustration and ultimately screaming which just made it so hard for me to focus but we got through it. She did not get the ASD diagnosis because the neurologist said Cri du Chat and ASD are one in the same with the exception we have a genetic reason with the CDC but because she does fall in the spectrum especially with all the new behavior issues we are having she was given the additional diagnosis of PDD (Pervasive Development Disorder). In essence PDD is a diagnosis that means “on the autism spectrum, but not falling within any of the existing specific categories of autism.” This is huge for us, I was very happy. Having this additional diagnosis will only help with services and therapies she would not have otherwise qualified for. And I am not bothered by the additional label, I have learned that it’s just a label it does not define my child, I know who she is. My goal is to provide her with the best opportunities in this life and if that means more labels than so be it. Sadly, the truth is that the children that look worse on paper get better services. I had an appointment with a psychologist through early intervention that I can now cancel because we have our diagnosis.
Now we need another EEG this one with her sedated, some more blood work and they want to put her on some meds to calm her but I am not ready for meds, at least not yet. Maybe one day I will feel we might need it but not right now. We have already experienced so much negative side effects from overexposure to medication with Sophie that I am afraid.
My reality check for the day was when the geneticist proceeded to tell me that Sophie has been the worst case of sickness with a CDC patient she has ever seen and even tried to look up any other possibilities as to why this could be happening with me in the room. The truth is “my daughter has barely no immune system, her resistance to antibiotics with the combined risk that almost any bacteria can be deadly to her” is my horrible reality. I don’t know what it’s like to have her healthy, I fear everyday that passes because with her it only takes a couple of hours for her to go from fine to totally dehydrated with a 104 fever and passed out. I want her to experience life but I’m afraid to expose her to anything, her compromised lungs scare me 24/7 I’m paranoid all the time. Sophie’s pediatrician Dr. Nieves (WHO WE ADORE BECAUSE SHE IS AMAZING!!!) has told me on several occasions that she is a special child not just because she has defied the odds against her but she somehow manages to make it through all this sickness while she has so much against her. Dr. Nieves has also reminded me that she is a gift but when God wants her home he will take her despite all our efforts to keep her here. While it may seem harsh it’s the truth and sometimes the truth hurts it’s scary but I need to be aware of how bad it can get very quickly. I cannot imagine my life without any of my children and none of us know what tomorrow holds. The fact that we have eliminated many medications and her liver enzymes continue to elevate with no explanation is also very scary.
While Sophie looks great on the outside her fragile little body is fighting a very big fight on the inside. I am lucky her soul is so strong, she is a fighter!