When Miss Alex was born, she was seemingly OK apart from meconium inhalation. She spent 8 days in SCU and at 12 days of age was discharged. 12 hours after being home, Alex wasn't OK. She was rushed to our nearest hospital where they insubated her and flew her to Brisbane. She spent the next 8 weeks in and out of ICU, had heart surgery requiring the use of human donor heart tissue, and also had sur
gery on her airways. All seemed to be going well until it was noticed that Alex wasn't meeting milestones, and wasn't growing. Alex had an ng tube placed, followed by a mic-key button for enteral feeding. She also had a few more smaller operations, and a stint on TPN. Things have just snowballed from there, Alex sees 12 specialists between Maryborough and Brisbane. She is on overnight oxygen and tube feeds, and a multitude of medications. In the past 8 years Alex has gained the following diagnosis' :
Laryngotracheamalacia
Coarctation of the Aorta
Epilepsy
Central Sleep Apnea
Perthes Disease
Hypotonia
Autism (and co-morbids)
Biotin Deficiency
Malabsorbtion
Glue ear
Severe Speech and language Delay
Severe Gross motor delay
Severe Fine motor delays
Uncoordinated swallow and aspiration
Short stature
Failure to Thrive. Just a few challenges that she has overcome :)
Alex is amazing, her strength, courage, sense of humor. She truly is a character. Alex will require care into her adult years. To what extent is yet to be seen. Medically, she will likely never leave the system. My goal is to ensure that eventually she is a contributing member of society, has fun and fulfills her dreams xo
