*Our story continued...* I foolishly forgot to mention that Gage had a double hernia repair done before everything started at his 4 month checkup. Then he got another umbilical hernia but thankfully that has corrected itself. Moving on... After leaving the hospital with the only diagnosis at the time being the ACC, Gage was monitored pretty closely and was then diagnosed with Failure to Thrive. On top of being behind on his growth, even for a preemie, we started to notice that he was not hitting any major milestones. At that point he was seeing just about every specialist you could think of and I had gotten in touch with Baby Net to seek additional help. Then we were introduced to a new program put forth by Nikki Haley in SC called Hands of Hope. Gage began having Physical therapy on Tuesdays, Speech therapy on Wednesdays, Early Intervention therapy on Thursdays and Occupational Therapy on Fridays. Seems this has been our schedule forever. ALL of his therapists are AMAZING and they now seem like extended family to us. There have been, I swear, a million appointments in between with numerous EEGs which showed slight abnormalities, a CT which showed his frontal lobes were quite small, sleep studies which showed slight sleep apnea, and the list goes on and on. We have been seeing these specialists and still taking shots in the dark because nobody could figure out what was wrong. Hes seen a gastroenterologist, a neurosurgeon, a neurologist, an opthomologist, sleep study specialist, etc, etc, etc... and hes also been seeing a geneticist. I MUST call this man out by name because I have the utmost respect for him and he is simply AMAZING!! Dr. Skinner with the Greenwood Genetics Center has been beyond wonderful. He promised me, personally, that they would not stop looking for answers until all options were exhausted. And thats exactly what he meant! *To be continued in next post...*
Posted on: Thu, 08 Jan 2015 07:02:03 +0000
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