ENJELICKIAGH AND REBEKIAGH (IDENTICAL TWIN GIRLS) - 16 months oldRetrun to 22q Stories
You are here
UPDATE 2018: The girls are now 5 years old and going to be starting school. They are still struggling with their speech but otherwise have been doing great. It has been a fun filled 5 years and learning their strengths and weaknesses like any other parent are difficult but to also include their disorder it becomes painful. This year we went to the fair to celebrate and after only 10 minutes, I as a mother began to panic as it was hot outside and although my girls drink water as if it were going out of style, they were not sweating. From what we had last heard from their immunologist she believes the girls are unable to properly maintain body temps. For someone without their complexity when you are hot you begin to sweat in attempts to cool yourself down. My daughters do not share this same function. For parents that have a child with 22q or recently diagnosed this disorder is hell, but its also something unique. When my girls were first diagnosed I panicked, read everything I could and then panicked some more as I feared the worse. Yet, my daughters showed me their resilient side. Everyday teaching me who is actually stronger, both mentally and physically. They show me every day that though they have this change it does not stop them from figuring out the problem. I have never treated my girls as if they were different, I simply keep a closer eye on the signs. That is all you can really do, sit back and enjoy the ride as I have quickly discovered that these kids will always show you that they can conquer all... Till next time.
UPDATE: Since the initial posting both girls have seen there fair share of difficulties. Both girls suffer from low immunity and have had some sever colds. Enjel has been cleared by Cardiology to begin participate in gymnastics and swimming which they both enjoy a lot. Both have have troubles communicating but with the help of AEA and training have adapted to using signs to communicate needs.
Having twins was not the plan. Due to some pregnancy complications Enjel and Beka were induced in May of 2013. An emergency C-Section was ordered after Beka's heart began to drop. At five weeks premature, the girls were whisked to the NICU. For four days Enjel remained on oxygen while Beka thrived. After two short weeks, Beka was released from the NICU with a clean bill of health, while Enjel was suffering from what we describe as "lazy baby syndrome". After an additional two weeks, Enjel was released from the hospital with what we thought was a clean bill of health. One night when the girls were six months old I heard what sounded like an old man coughing over the baby monitor. Scared, I ran into their room to discover my baby girl struggling to breathe. At two o'clock in the morning, I was rushing my baby girl to the emergency room. Three days later we discovered the name that was causing this unusual noise "Stridors" because of the severity surgery was a necessity. During surgery, the doctors discovered an abnormality they described to me as "Laryngeal webbing" they then referred us to Genetics. After some testing Enjelickiagh was diagnosed with Di George or 22q Deletion Syndrome. But they question still remained, did her identical twin sister share the same disorder? A few months later, we learned the answer…YES. Today, the beautiful 16 month old girls, although still developmentally challenged are making great strides. We have been blessed to know that their deletion happens to fall in an area that does not cause too many abnormalities, but they are still being monitor very closely.