[sophiemom]

I am the mother of a beautiful 3 year old named Sophia Soleil, soon to 4 in June, who was just dx with SAA. She has been dealing with strange illnesses since she was 8 months old when she first dealt with RSV and an antibiotic resistant ear infection. She then had one infection after another, dropped vaccines titiers and had failure to thrive. She then acquired Epstein Barr, which led to rashes that took a year to go away and seizures whenever she gets sick. Although she was sick, her labs were reasonable with what she was dealing with until about a year and half ago, when she began going leukepenic when sick and kicking out immature cells. After being pushed by an annoying momma, docs finally did a bone marrow biopsy and we just got the results back. Due the results they have dx with SAA, although the cytogenetics are not back yet and there was pseudo Pelger Huet cells and other abnormalities in her myleoid cells, so we are waiting to see if there are more indicators that it is actually MDS. Also, the docs say they still need to see why she isnt holding vaccine protections, although it could still fit in. Despite illnesses and tests.. she is an amazing, intelligent, and strong willed lil girl who blows my mind everyday! With her being so young, I have no clue where our path will lead now.. I try to keep everything very positive in our house and we dont focus on "sick kid" stuff... but inside, esp late at night, my heart breaks. No child of 3 should have to know what her white blood cells do or have the color of blood test caps memorized. Thankful that there is this forum, where I can learn and share.