Allison Pike
 |
Our daughter Allison is a happy, smiling, active and bright ten year old. She has fought many battles with her health and to many peoples amazement has won! She is our third daughter who was born by emergency c-section due to fetal distress and until her birth thought to be a normal, healthy baby. However, we knew we were in big trouble when the neonatologist commented that she only weighed 3lbs... For several (4) hours they tried in vain to intubate her and ended up bagging her all the way to the university hospital. It took a ENT to stitch her tongue down before they could intubate her. She has Pierre Robin Sequence along with many other congenital anomalies. She was trached at 5 weeks and came home at 8 weeks with ng tube feedings and no nursing! We were crazed but somehow we all pulled through those first weeks and Allison has weathered many of our "learning experiences." She spent a great deal of time in and out of Loyola University Medical Center the first three years of her life due to pneumonia's and RSV and such... A few attempts to close her palate -- which were unsuccessful due to the inability of open her mouth more than an inch... (another anomaly). It seems as if every part of our little girl has been touched by the syndrome she was eventually diagnosed with at age 2 1/2, It is called Toriello-Carey Syndrome and is a very rare genetic syndrome . She has come a long way from those NICU day's where they prepared us for her death and those first years we waited for her death... We have since put that waiting game away and have put our faith and trust in Allison - she has shown us more than once who is in control of that game - Allison and the Lord! She is in a full day school program with a wonderful nurse (provided by the school). She also receives private therapy at our local Easter Seals - also mom's employer... She has 2 older sisters and a younger brother who surprised this family three years ago with his very presence...Let's talk about a trying time - a surprise pregnancy and the chance of another child with the same issues - to say I was a little neurotic - is putting it mildly - but Jack is truly as are all my children a gift from God! Allison also has a g-tube (Bard button) with a nissan and uses a hot pink wheelchair to get around - although she rolls faster than anyone I know... Her favorite tv channel is the preview channel and we are blessed to have her in our life's...
